Social Isolation in Mid Hampshire 12

Acknowledgements

Action Hampshire would like to acknowledge and gratefully thank the following organisations, their representatives and other individuals for their participation in this study:

Organisations:  Age Concern Hampshire: OPAL  Age Concern Hampshire: Food and Friendship  Andover Crisis and Support Centre  Carers Together  Chrysalis  Contact the Elderly  Gurkhas and Nepalese Community Winchester  Hampshire Parent Carer Network  Princess Royal Trust for Carers  The YOU Trust  Veterans Outreach Support  Village Agent – Compton & Shawford  Village Agent – Stockbridge  Winchester and District Young Carers  Winchester Go LD  Winchester Nightshelter  Winchester Wellbeing Centre (Solent Mind)  An organisation supporting people with a specific health condition (anonymous)  An organisation supporting families with young children (anonymous)  A member of Andover Men’s Shed (anonymous)

Individual respondents including:  Andrew Monaghan  Estelle Sandles  Kirsty Rowlinson  Madeline Close  Rama Gurung  Mark Lilley  Allan McVeigh  David Downey  Christine Pattison  Suzan Hyland  Others who wished to remain anonymous

Sonia Wilson and Dr Rose Lindsey who assisted with the planning and delivery of the project.

Contents

Summary ………………………………………………………………………...……….. 1

Social isolation: a national and local priority ……………………………………… 5

Introduction …………………………………………………………………………….... 6

Literature review ………………………………………………………………………... 8

Who might experience social isolation? …………………………………...... 9

Conversations with local not-for-profit organisations …………………………... 11

Factors identified as major contributors to social isolation in Mid Hampshire 12

External circumstances …………………………………………………………. 13

Rurality ………………………………………………………………………...... 22

Transport/mobility ………………………………………………………………... 25

Barriers to benefitting from existing provision/networks ………………… 26

Not accessing what is available ………………………………………………. 29

Impact of social isolation ……………………………………………………………… 34

The scale of the problem ……………………………………………………………… 37

Interventions ……………………………………………………………………………. 38

The future ………………………………………………………………………………… 39

Further discussion and points for consideration ………………………………… 40

Bibliography ……………………………………………………………………………. 45

Appendix 1: Social isolation, a national and local priority ……………………… 48

Appendix 2: Background to the study and full methodology …………………. 50

Appendix 3: Literature review .………………….…………………………………… 55

Appendix 4: Interventions …………………………………………………………….. 62

Summary

Background Action Hampshire was commissioned by Mid Hampshire Better Local Care to investigate social isolation in Mid Hampshire. The study was carried out in two parts: a literature review, and a series of qualitative interviews with expert not-for-profit organisations and individuals.

What is social isolation? Social isolation occurs when a person is separated from social contact, community involvement or access to services. It also includes having poor quality social contacts.

Impact of social isolation on health and wellbeing Academic literature tells us that there is a clear correlation between social isolation and relatively poorer health and wellbeing. Impacts include: higher mortality an effect comparable to obesity greater risk of breast cancer recurrence increase in likelihood of developing coronary heart disease and stroke earlier admission to residential or nursing care greater risk of emergency hospital admission and re-admission

Who might experience social isolation? People can be affected by social isolation at any age or stage of their lives. Those particularly at risk of social isolation include:

 older old (those over 80 years old)  new, young or lone parents  parents of young children (particularly mothers with postnatal depression)  informal carers (young & old)  people experiencing domestic abuse  lesbian, gay, bisexual or transgender people  long term unemployed  people with autism, a learning disability or a behavioural problem (and their families)  people with a physical disability or long term condition (and their families)  people with a mental health condition (and their families)  men living alone  recent migrants or those with few English language skills  people experiencing significant poverty  young people who do not conform to peer norms of appearance, language, behaviour  people with substance misuse problems  veterans  ex-offenders

Page 1

Risk factors There are a number of factors that can contribute to people feeling socially isolated:

 Individual factors eg sexuality, ethnicity, age, personality  Health, wellbeing, disability eg sensory impairment, physical or mental ill health  Life transitions eg new parenthood, school experiences, becoming a carer, bereavement, acquiring a disability, moving to a new area  Social issues eg domestic violence, unemployment, poverty, transport, housing

Factors contributing to social isolation in Mid Hampshire Interviewees identified a range of issues that they felt were contributors to social isolation in Mid Hampshire. These were categorised into five broad themes:

External Circumstances  Major transitional life events that can lead to social isolation include moving away from friends, family and social networks; a change in role and identity because of retirement, informal caring responsibilities or bereavement; and acquiring a disability in later life.  Whilst isolation is “more about situation than location”, living in an intimidating neighbourhood, having a shortage of social spaces, and experiencing difficulty negotiating the built environment can all contribute to becoming socially isolated.  Mental illness and stigma are two major contributory factors to social isolation.  Social isolation can also affect family and friends “by association”.

Rurality  Transport and thus access to support and services are big challenges in rural Mid Hampshire.  Although the risk of becoming socially isolated is probably reduced if you live in a village, for some people being “visible” in a small community can be problematic.

Transport / Mobility  Loss of private transport is a big factor in terms of the risk of social isolation.  Accessing public transport is particularly challenging for some individuals eg those with a learning disability, visual impairment, or anxiety issues.

Barriers to benefitting from existing provision / networks  Social and cultural norms and society’s unwritten rules influence whether a person’s behaviour is deemed acceptable or not by others.  The impact of disability on communication can be a huge barrier.

Page 2

Not accessing what is available A number of reasons were identified as to why people at risk of becoming isolated do not access the support that is available:  they didn’t know about it  pride and independence  low mood, anxiety, lack of confidence or lethargy  worry about repercussions  secrecy and lack of trust  technological barriers  language or cultural barriers  not recognising own need  unsuitable or inappropriate services  gender barriers (particularly for men)  practical difficulties

Concluding comments Social isolation can occur at any age, life-stage or social situation. However, some clear themes emerged about people who are particularly susceptible to social isolation.

Men. Men (of any age) who live alone can be particularly vulnerable to ongoing social isolation. They can be more susceptible to becoming isolated due to established gender roles and norms, and then less likely to address the problem.

Worry. Many people appear to live in a state of almost constant worry, which can be both a cause and a consequence of social isolation. This worry may cause their lives to become quite ‘small’, cutting down their opportunities for interaction with others and leading to isolation. People’s worries include fear of falling, being judged by others, using public transport, and leaving a dependent alone. Conversely, a socially isolated life may lead people to ‘brood’, significantly increasing their levels of anxiety and worry.

Mental health. Social isolation can be both a cause and a consequence of poor mental health. Mental health issues may affect a person’s ability to make or maintain relationships, leading to withdrawal from everyday human contact. Conversely, someone who is becoming isolated, perhaps because of the practical challenges of age or infirmity, may find themselves becoming depressed or liable to harmful behaviours.

Informal carers. Informal carers can become very vulnerable to social isolation. Their changing role, and the challenges of their day-to-day responsibilities, can reduce opportunities to maintain social contact. Informal carers frequently do not identify themselves as such, and therefore do not seek the support that they need. Pride; fear of being seen as ‘not coping’ and the possible repercussions; the loneliness of no longer being able to communicate with the cared-for individual can all contribute to an informal carer becoming increasingly isolated and withdrawing from the outside world.

Page 3

Rurality. Our research suggests that social isolation may be less prevalent in rural areas, due in large part to the support networks often present in villages. However, it is possible that isolation is just more hidden in rural areas, with people guarding their privacy more fiercely. It is also important to recognise the changing nature of some rural areas in Mid Hampshire, as they become less ‘communities’ and more dormitory settlements.

Some points for consideration 1. Proven correlation between social isolation (and/or loneliness) and health & wellbeing. The direction of correlation is less clear. Poor mobility can stop you getting out and about, leading to social isolation. Conversely, if you feel alone and isolated for some reason, you may remain at home and your mobility suffers. The same holds true for isolation and mental health. 2. Few of the organisations interviewed undertake work focussing specifically on social isolation. It may be helpful to encourage and support organisations to make social isolation an overt part of their remit. 3. There appears to be less social isolation in rural areas because of strong informal support networks. This needs to be balanced with the view that people in small communities often feel a need to protect their privacy. Perhaps social isolation in rural areas is equally prevalent but more hidden. 4. Agencies need to be cautious of over-depending on digital services as a substitute for face-to-face contact. Barriers are not just about IT literacy but also include income, access, slow broadband and literacy levels. 5. Men are often more reluctant to recognise and admit that they are isolated. New thinking is needed to engage with and support men specifically. 6. Private businesses could be part of the solution eg by providing accessible fly fishing for older men. 7. Understanding why BME communities are often not accessing mainstream services. 8. A shortage of volunteers, especially younger volunteers (eg many lunch club volunteers are older than attendees), could have a major impact on future service provision, particularly in the voluntary sector. 9. Short term thinking and funding often means that interventions and projects do not have a chance to succeed or prove their efficacy. 10. We can learn from cheap and innovative solutions being introduced elsewhere eg casserole clubs. 11. It is not necessarily the people who are most at risk of social isolation who are being reached by current services.

Page 4

Social isolation: a national and local priority

Growing evidence that social isolation and loneliness directly influence health and wellbeing outcomes has highlighted the need to address these issues as a priority. There is a strong imperative to address social isolation, providing early intervention wherever possible, and this can now be seen in national policies and strategies from government departments, public health agencies and voluntary sector bodies.

This increasing interest at national level to address social isolation and loneliness is also reflected at a more local level within the county of Hampshire. Social isolation has been identified as one of the priority issues by the Mid-Hampshire Local Authority Joint Strategic Needs Assessments and by the Hampshire Health and Wellbeing Board.

Further evidence for this increased interest is presented at Appendix 1.

Page 5

Introduction

Social isolation is receiving increased attention from public health professionals, GPs, social care agencies and the not-for-profit sector. A wealth of data now exists indicating that social isolation has a negative impact on an individual’s health and wellbeing, resulting in increased pressure on health and social care resources and budgets.

This study was undertaken by Action Hampshire. It was commissioned by the Mid Hampshire locality of the South Hampshire MCP (Multispecialty Community Provider) vanguard who wish to better understand the nature of social isolation in the Mid Hampshire area and its impact on local residents.

The study is focused on providing a real life picture from organisations and individuals working with, or having knowledge of, groups of people who may be at risk of social isolation. What is reported, therefore, may not be absolute reality, but a version of reality filtered through the perceptions and views of the not-for-profit organisations and individuals who have relevant experience, expertise and insights.

Social isolation is often associated with older people. One aim of this study was to try and show the diversity of groups and individuals that are considered at risk. Given the rural nature of much of Mid Hampshire another aim was to investigate whether there is a rural dimension to social isolation in this locality.

The work was carried out through a combination of desk-based research and qualitative fieldwork. Semi-structured interviews were carried out with 20 not-for- profit organisations and 10 individuals between October 2016 and January 2017.

Aims and objectives of the study The overall aim of the study was to contribute qualitative data to support and inform a better understanding of the issue of social isolation in the Mid Hampshire area and the impact that this has on residents, in particular their health and wellbeing. The specific questions the study has tried to answer can be found at Appendix 2.

What do we mean by social isolation? This is discussed in more detail in Appendix 2 but the simple definition of social isolation that we have used is1:

Isolation is being by yourself. Loneliness is not liking it.

It is important to note that social isolation is not necessarily the same as loneliness. People can be lonely but not isolated, and isolated but not lonely. Somewhat confusingly, though, the two tend to be used interchangeably in the literature.

1 Beach, B and Bamford, SM

Page 6

Methodology This study focused on the collection of qualitative data: investigating perceptions, interpretations and experiences in a systematic and rigorous way. There were two stages to the study and a more detail explanation of these has been provided in Appendix 2.

Desk research stage This was undertaken through internet searches and through reading of research papers, strategy and policy documents. This stage included a search for relevant demographic information for the Mid Hampshire area.

Fieldwork stage The findings of the desk research stage informed the fieldwork stage of the study. The focus of this stage was on understanding and exploring participants’ views and experiences from their own perspectives. A series of semi-structured interviews aimed to identify the scale and impact of social isolation as perceived by those working in the field.

The organisations involved in this study were selected on the basis that their primary purpose was to work with people and groups that might be considered at risk of, or experiencing, social isolation. A number of individuals who had first-hand knowledge of a particular condition or situation were also invited to participate.

The conversations were facilitated by:  Jo Dixon, Senior Engagement Officer at Action Hampshire  Sonia Wilson, an Associate of Action Hampshire

When the conversations had taken place, the data was analysed and a number of overarching themes identified. In addition, where there were variations that could be linked to different groups, these were also drawn out.

Page 7

Literature review on the impact of social isolation on health and wellbeing

The literature review identified a significant body of evidence about the impact of social isolation on health and wellbeing. The results of the literature review have been included as Appendix 3.

Risk factors The following factors are usually identified as contributing to, or having an influence on, social isolation:

Individual Factors Life Course Transitions

Sexuality New / young / lone parenthood Ethnicity School experiences Age Becoming a carer (young or Personality adult) Retirement Moving into residential care Unemployment Divorce or separation Bereavement Moving to a new area Young care leavers Leaving armed services Acquiring a disability or chronic illness

Health, Wellbeing, Disability Wider or Social Determinants of Health Cognitive impairment Sensory impairment Domestic abuse / violence Substance misuse Long term unemployed Physical or mental ill-health Recent migration Disability High population turnover Poverty & deprivation Homelessness Stigma Transport Physical environment Technological changes Housing

Page 8

Who might experience social isolation? Although much has been written about the impact of social isolation (and loneliness) on the health and wellbeing of older people, it is also apparent that people can be affected at any age or at any stage of their lives.

We believe that in Mid Hampshire, the list of those who are particularly at risk of becoming socially isolated includes, but is not limited to:

 Older old (those over 80 years old)

 New, young or lone parents Parents of young children (particularly mothers with post natal  depression  Informal carers (young & old)

 People experiencing domestic abuse

 Lesbian, gay, bisexual or transgender people

 Long term unemployed People with autism, a learning disability or a behavioural problem  (and their families) People with a physical disability or long term condition (and their  families)  People with a mental health condition (and their families)

 Men living alone

 Recent migrants or those with few English language skills

 People experiencing significant poverty Young people who do not conform to peer norms of appearance,  language, or behaviour  Homeless people

 People with substance misuse problems

 Veterans

 Ex-offenders

Page 9

Impact on health and wellbeing The desk research stage identified a whole body of research and evidence reviews that have tried to find associations between social isolation and physical and mental health problems. The literature does suggest that there is a clear correlation between social isolation and relatively poorer health and wellbeing. Impacts include:  higher mortality  an effect comparable to obesity  socially isolated women face a greater risk of breast cancer recurrence  increase in likelihood of developing coronary heart disease and stroke  earlier admission to residential or nursing care  greater risk of emergency hospital admission and re-admission

The rural dimension Given that much of Mid Hampshire is rural, this study also set out to see if there was a rural dimension to social isolation. The significant factors are the age of those living in rural locations and access to transport and therefore to health, social care and other services that are delivered some distance from where people live. For older people in particular, a crunch moment is when either they or the main driver are no longer able to drive. A free bus pass is useless if there is no bus.

Defra (2013)2 reported that the picture for older people in rural areas was potentially a rosy one. They tend to have higher incomes, higher education levels, lower rates of depression and higher levels of physical activity. However, there were suggestions that the traditional informal support networks might be weakening, eroded by an influx of new people, changing lifestyles and habits, and the increasing focus on digital communication.

At the other end of the spectrum, young people living in rural locations, some miles from their secondary school, find it hard to socialise with school friends. Poor broadband speed and mobile phone strength can also isolate them from their peers.

The local context The Mid Hampshire area has no specified boundaries but, based on a rough approximation of GP ‘catchment areas’ and corresponding wards, we estimate that there are approximately 210,0003 people living in the Mid Hampshire area, approximately 16% of Hampshire’s total population.

An analysis of the age structure, ethnicity and household composition of Mid Hampshire suggests that it is broadly the same as that of wider Hampshire. On self- reported measures, health appears to be slightly better in Mid Hampshire.

As would probably be expected, in relation to deprivation, rural areas in Mid Hampshire do not score highly on most domains used in the Indices of Multiple Deprivation. It is, however, in the Barriers to Housing and Services domain (accessing services and affordable housing) that a number of them fall into the 0 – 10% range.

2 Defra. Rural Ageing Research Project. Summary Report of Findings. 3 All statistics in this section from ONS, with exception of OCSI data

Page 10

Social isolation in Mid Hampshire: conversations with local not-for-profit support organisations

Qualitative interviews were carried out with a range of organisations (20) and individuals (10) working with people likely to be most at risk of social isolation. We defined social isolation as broadly: the absence of contact with other people.

Interviewees identified a range of issues that they felt were contributors to social isolation locally. These were then categorised into five broad areas:  external circumstances  rurality  transport / mobility  barriers to benefitting from existing provision  not accessing existing services

These categories are discussed in more detail in the following sections.

The following mind map seeks to provide a quick overview of the issues outlined.

Page 11

Factors identified as major contributors to social isolation in Mid Hampshire

Page 12

External circumstances During the conversations, many respondents talked about the different external circumstances that they believed contributed towards their beneficiaries becoming socially isolated. Some factors could be considered generic, while others relate to specific conditions or circumstances. The external circumstances cited will impact differently on different groups of people.

The external circumstances identified are shown in the diagram below, and expanded upon in the following sections.

Moving home A transition highlighted in terms of social interconnection related to moving home. This can be a difficult time for anyone but particularly for older people.

Moving to be nearer adult children means that practical/emotional support may be closer to hand. However, it was pointed out that just because children and family live nearby does not mean that they have the time or the inclination to visit regularly or provide support. The older person’s family may not pick up on a problem during a short visit, or the parent may put on a “brave face” so their family is not worried. Losing your network of friends and neighbours can be extremely isolating, particularly if you are not a ‘joiner’ or a naturally gregarious person. If there is a crisis, then without the “buffer” of a social network, an individual can quickly become isolated.

Page 13

If people move home after they retire and they aren’t very outgoing or a ‘group’ person they can quickly become isolated. Sometimes people go on holiday and fall in love with the place. They move there when they retire and suddenly realise the reality is very different. They’ve left their old social network behind, and never quite manage to create a new one. Then one partner dies, and it all goes downhill from there.

Within the Nepalese Community, when someone relocates for a job etc, they will generally take their elderly parents with them. So the older members of the community have to move away from their established social networks. If they do not speak much English and are moving to an area with few other Nepalese people, this can be an extremely isolating experience.

For certain people, the decision to move home may be a forced decision. For those escaping an abusive relationship, it is often doubly hard to start again and build up social networks. The risk of entering another abusive relationship or of being exploited is high due to the isolating effect of this situation.

For many older people who are transgender or HIV+, one of their biggest fears is to have to enter residential care and risk ostracism by other residents or staff.

Moving to a new country can of course result in social isolation. Within the Nepalese community, those considered most at risk are the older ex-Gurkhas and their wives who have relocated to the UK. Some, but not all, are living with their children but are left largely on their own while their children are at work. They may have little knowledge of the local way of life. This and the major barrier of language means that they are confined to their homes for much of the time. Women are often reluctant to go anywhere without their husbands.

Becoming a carer Some of the people most at risk of social isolation are those people who provide informal care, but do not recognise or identify themselves as a carer. Their role changes from that of a spouse, friend or offspring to ‘a carer’, bringing with it practical and emotional challenges.

My mum hates it when the doctor says she’s dad’s carer. She says ‘I’m not his carer, I’m his wife’. But my dad latches onto it and says ‘the doctor says you’re my carer, so you have to do x, y, z’. And mum just does it, although really, she wants to go and have a cup of tea with her friends.

Page 14

This role change can happen at any age and often means that the individual does not get the support they require nor do they access the information they need to help with decision making. They can also start to gradually withdraw from social contact.

The husband noticed that he was forgetting things (in fact it was the early stages of dementia) and he stopped wanting to go out. So his wife stayed at home with him and without realising it, was slowly isolating herself too.

The nature of the day-to-day caring role also means that it can be difficult to meet like-minded people.

Men in particular can find it hard to take on a caring role and having to do the cooking, shopping, budgeting and even doing their partner’s hair.

An older dad had to give up work to look after his sick partner and their children. He found this really difficult because his identity and status had been tied up in his career.

Some young carers are reluctant to leave an ill parent on their own and will put the parent’s needs before their own. Many young carers are at risk of social isolation because their caring role separates them from their peers. Those most at risk are in single parent families where the young carer is the only child.

Community / neighbourhood / environment Most study participants did not identify particular geographical locations where people might be more at risk of social isolation.

Social isolation is more about situation than location.

However, neighbourhood does seem to have an impact on social isolation. People who find their neighbourhood intimidating are less likely to be ‘out and about’ engaging with other people, particularly if they don’t have access to private transportation.

Social isolation seems to be more prevalent in areas of social housing where there are high levels of drugs, crime and alcohol.

Young carers appear to be clustered in areas of relative deprivation. In Winchester, the majority of young carers attending formal groups are from the relatively more deprived areas of Stanmore, Winnall and Highcliffe.

Page 15

Social spaces where people can come together are also disappearing particularly in rural Mid Hampshire. Shops, post offices and pubs are meeting places (on a formal or informal basis) as well as spaces that enable the community to identify vulnerable people.

Older and long term ex-offenders may struggle with the ‘outside world’ because they are not accustomed to having control over their lives. They may find it easier to lead a solitary life, away from social contact.

The built environment can also present significant barriers to social contact. For wheelchair users and visually impaired people, cars parked on pavements, uneven paving slabs, overgrown hedgerows etc make it far more difficult for people with disabilities to get ‘out and about’. It is compounded by the fact that many homes and buildings are not easily accessible. Unsurprisingly, some disabled people choose to remain in their homes where they know they can move around freely without any nasty surprises.

Closed communities For some people, the local church community can be a lifeline. In rural locations particularly, it is often the church community that identifies homeless people and rough sleepers and helps them to access the support available in larger settlements.

However, for some people cultural or faith communities can be a contributor to their social isolation. For example, transgender people are not accepted by a number of faith groups (to some extent this does depend on the attitude of individual leaders), and their families can also be ostracised “by association”.

During one conversation honour based violence, especially when English is a second language, was also highlighted as a factor that could lead to social isolation. Victims often face a stark choice: accept the violence and remain in their community, or leave and face potential isolation elsewhere.

Those who are in less traditional roles (for their gender) can also face challenges.

We worked with a lone father who was becoming very isolated. He was trying, but couldn’t find a peer group to give him companionship and moral support.

Page 16

Children with special needs in mainstream schools can become socially isolated because they are viewed as ‘different’ to their peer group.

I was talking to a mother of a child with a learning difficulty who is in mainstream school. She said that her daughter cries every night because she wants a friend. Just one friend would do. The mum said that if she could, she would pay someone to be her daughter’s friend. It just made me want to weep.

The absence of workplace networks Respondents spoke about the problem of not being in a workplace and not having an office network with which to engage.

Often a parent of a child with a disability will not be in employment due to practical considerations (childminders, hospital appointments, frequent illness) and may have few opportunities for socialising with other adults. Most children who attend a special needs school will be provided with school transport. This means that parents of disabled children do not even have the opportunity to meet and chat with other parents at the school gate.

In relation to visually impaired people, one respondent felt that the people who are most at risk of social isolation are those of working age who are not working. It should be borne in mind that around 70% of working age people with a significant visual impairment are not in employment.

If you don’t work, what do you do all day? Your opportunities for socialising are already limited by transport difficulties, all your peers are at work, you haven’t got much money, and there are often no leisure or volunteering opportunities accessible to blind people. So what do you do all day? Sit at home on your own.

Losing the workplace network (either through retirement or redundancy) can be especially difficult for men and more so for those living on their own. Often, men’s interests are of a more solitary nature – fishing, gardening, model railways – with less reliance on social interaction. They may struggle with losing their status, their identity and the camaraderie and banter from their work colleagues.

In Mid Hampshire there are a significant number of veterans for whom there is an even greater sense of loss. Not only have they lost their career and status, but many find the current news depressing and are questioning whether their time in the services was worthwhile. One organisation that supports veterans

Page 17 told us they are having to provide emotional support and help to younger and younger veterans, many in their 30s.

Veterans may have experienced traumatic events and if they are isolated, this gives them plenty of time and space to dwell on these past events. This can lead to mental health issues.

Bereavement / separation Loss through bereavement (or separation) was identified as a major transitional life event that could lead to social isolation. In addition to a feeling of loss, there are also additional impacts on particular groups.

A visually impaired person who loses their sighted partner no longer has someone to drive them or to act as their reference point in terms of social connections.

If a visually impaired person has had a sighted partner and something happens to that partner, this can be catastrophic.

Someone with HIV+ status may be forced into revealing their status if a partner dies and they require support or care.

Losing a partner also means loss of certain knowledge and skills. The view was expressed that in the case of older women, they struggle because their male partner has always taken care of the business side of life; for older men, they may struggle with the practicalities of looking after themselves and cooking, cleaning and washing.

This is the generation that does not expect everything to

be handed to them on a plate. They will try and find their

own solutions but it is at this point that they are at risk of

social isolation.

The impact of bereavement does not necessarily have to relate to a close family member or partner. Older people also become increasingly isolated as their friends and acquaintances die or experience cognitive decline.

Acquired disability Acquiring a disability in later adulthood – for example a visual impairment or hearing loss - also impacts on people’s ability to communicate and engage with others. Often, people find it incredibly difficult to cope with their impairment, and find it easier and less frustrating / distressing to retreat from social contact.

Page 18

We know of one elderly man who sits at home all day and stews because of his hearing loss. He is becoming more and more depressed.

For deafened (acquired hearing loss) and hard of hearing people, it can be a great effort to communicate effectively with anyone. Some deafened / hard of hearing people may find it just too difficult to understand other people, or to put up with the frustration of their family and friends, and gradually retreat from social contact.

They struggle to communicate with everyone … they are culturally ‘hearing people’ who can’t hear well anymore. It’s quite embarrassing to keep saying “pardon, pardon” so they either feel that: they are annoying people by asking them to repeat things all the time; or they talk constantly so that they don’t need to try to understand anyone else; or they just stop interacting with other people. It’s really tough and people get terribly left out.

Lone parents For many people who become lone parents, it can be a huge life shift. They may well be dealing with emotional ‘fall-out’ at the same time as working out the practicalities of their new life.

It can be particularly challenging for parents of disabled children. The lone parent may struggle to physically make a journey with his/her child (particularly if public transport is involved), and suitable childminders or babysitters may not be readily available. In this scenario, the parent’s social interaction will be severely limited. If challenging behaviour and poverty is thrown into the mix, the chances of social isolation become far higher.

Trigger dates There are certain times of the week / year when the risk of social isolation and impact on health and wellbeing are heightened. This is particularly true of the Christmas period:

Three veterans, separately, approached us before Christmas because they were really concerned about whether they could get support over the festive season.

There is a similar picture for transgender adults.

One transgender client said that they would be going out on their boat with a bottle of Jack Daniels.

Page 19

For older people it is often the weekend that can be the most isolating time as statutory and other services rarely operate then. Clubs for those who are over age 70 are now being offered at weekends and Sunday afternoon tea parties are proving popular – particularly with older carers where the cared for person is being looked after by a family member, thus releasing the carer to have some time on their own.

Mental illness People with a mental illness are often at risk of social isolation. Respondents feel that mental ill health is one of the key conditions associated with social isolation. For some people, their problems are entrenched and without continuing support they are at risk of becoming totally isolated.

There is a question mark over whether mental health problems lead to social isolation, or vice versa.

I think mental health issues lead to social isolation, rather than the other way round. But that could just be about the type of people who are referred to us or who self-refer.

People with mental illnesses may find it hard to make friends and contacts and need a “safe” place where they can come and have a sense of kinship. Respondents felt that drop-in facilities were often used by people who felt chronically socially isolated.

If you have anxiety and depression your confidence and self-esteem goes and you find it difficult to maintain contacts and friendships. If you experience psychosis, you are ostracised. People who have borderline personality disorders have trouble making social relationships at all.

Stigma Stigma (or self-stigmatisation) can be experienced in many different situations and the anxiety associated with it can cause someone to withdraw socially.

People with severe mental health problems can be socially isolated because of the stigma and feeling of ‘judgement’ related to their condition.

This can also have an impact on the wellbeing of their families, particularly on young people who are caring for a parent with a mental health illness who do not wish to have this known more widely.

The families of people in prison often find themselves isolated because of associated stigma. They may be struggling with loss and anger over their loved one being incarcerated, together with practical and financial problems, and stress related to keeping their situation hidden from others.

Page 20

Ex-offenders and substance abusers may also end up isolating themselves for a variety of reasons such as stigma and (perceived) judgement by others.

Some respondents felt that fear of being stigmatised could act as a particularly strong barrier to prevent people from making meaningful contact with others. HIV+ status, for example, can lead to someone becoming isolated for fear that their status will accidentally be disclosed. Growing older can be the start of the journey to a place where they no longer feel comfortable nor wish to be open about their status. A major fear for many transgender adults is being ‘outed’ if taken to A&E after an accident.

A young transgender adult who was admitted to A&E felt that staff were coming to look at “the freak”.

A parent of a child with challenging behaviour but who is in mainstream education may find themselves excluded by other parents at the school gate because they do not want their children associating. Not only is the parent isolated but so is the child in the school playground.

Page 21

Rurality

One of the aims of the study was to see if there was a rural element to social isolation, particularly in the Mid Hampshire area.

Transport / access to services and social activities When discussing rurality, the issues of transport and access to support and services came up again and again as the big challenge. It is compounded if an individual or household does not have their own transport or access to a car when needed.

Physical access can also be a barrier to making social connections. Visually impaired people, older people, individuals with a physical disability are far less likely to traverse a narrow, dangerous country lane. Such a barrier to going out to local shops or meeting places reduces the opportunities for socialising. Funding cuts have reduced the number of voluntary transport schemes to take people to clubs and activities, increasing the risk of social isolation as older people and those with disabilities are no longer able to easily access social interactions.

Community spirit There was general agreement however that the risk of becoming socially isolated was often reduced if you lived in a village. If you have lived in a village for some time you are more likely to be linked into the networks and groups. Some Mid Hampshire villages are very active with a lot going on particularly for older people. Voluntary car schemes transport less mobile people to and from venues and activities.

Page 22

People are not badly off in a village if they make it known they need help, but some people will suffer in silence.

The risk of social isolation varies greatly depending on the nature of the community itself and how far friends and neighbours look out for each other.

I can think of two local villages that are neighbouring, but completely different. One of them is a ‘traditional’ kind of village – everyone looks out for one another and it has a real sense of community. But the other village is completely different. It has lots of wealthy commuters who like living in a pretty place but don’t actually involve themselves in village life. Their kids don’t go to the local schools and it feels like an expensive dormitory. I can imagine that older residents could get pretty socially isolated.

‘Conservative’ character / gossip However, some circumstances and characteristics might be regarded as less acceptable within a conservative rural community.

One situation highlighted was that of a transgender adult who was rejected by the community and, eventually, forced to move away. However, there was a different scenario in another village where a transgender adult had been fully and happily integrated into the community. People with dementia may experience similar stigmatisation.

Being ‘visible’ in a small community can be difficult. This was raised in relation to ex-offenders, the families of those in prison, or someone with HIV+ status. For these individual situations it is very unlikely that there will be a support group or like minded people nearby with whom to share experiences and concerns. In order to keep the situation hidden, people may withdraw from social interaction.

It is unlikely that people living in a rural area and who experience domestic abuse will find anyone nearby to talk to about it, or any local support groups.

We do a lot of work with women experiencing domestic violence in rural areas. Social isolation is far more prevalent amongst women who can’t drive or have one car that the husband uses for work.

Social isolation in a rural area can also include isolation by friends and neighbours if a person who is being accused, for example, of domestic abuse,

Page 23 is a long standing member of that community or a member of an established family. It is also easier for the abuser to “control” a partner in a secluded setting than within an urban one where getting out and about is easier.

Villages can be cruel. People talk about “them” or “those people”.

Although transport, access and being visible can all contribute to the risk of becoming socially isolated within a rural community, there was widespread agreement that social isolation can be experienced at least as much in an urban location as a rural one, though perhaps for different reasons. In urban settings people do not always know their neighbours, the population may be transient and people may not notice a neighbour in need. Some rural areas are, however, also changing and new people are moving in for whom the village community has less importance.

Page 24

Transport / mobility Interviewees reported transport and mobility as major factors in making someone more at risk of social isolation.

Loss of private transport is a big factor in terms of risk of social isolation, particularly for those living in rural areas. You no longer have flexibility in how and when you travel.

Some groups find accessing public transport particularly testing even where there are frequent buses. This was highlighted in relation to people with mental health issues, learning difficulties, physical disabilities or a visual impairment. For these people, it can be quite complex to catch a bus. Living in a rural area exacerbates the situation. However, if there is no one to assist you in your journey, it makes little difference if you live in a rural or urban location.

Many respondents cited the cost of transport as a barrier to going out or accessing support services, particularly for families. This was an issue that surfaced during the recent Hampshire County Council consultation on the closure of children’s centres.

In addition, young people living where no evening transport is available are unable to go out to evening activities unless they have someone willing to give them lifts.

For those who are visually impaired there can be a reluctance to ask for directions or assistance in case they are given the wrong information or left in an unsafe situation.

Page 25

Barriers to benefitting from existing provision / networks Some groupings were reported as being at risk of social isolation because there were barriers preventing them from accessing existing provision.

Lack of awareness of social ‘norms’ / interpersonal skills / anxiety During the interviews one issue came up on several occasions, and it related to social norms and rules. The inability to follow these norms or exhibiting behaviour not considered acceptable by others can be a factor increasing the risk of someone becoming socially isolated.

People who have difficulty with interpersonal situations and who are not perhaps aware of the unwritten rules of social interaction can find themselves being shunned or rejected. For someone with autism it is the unpredictability of life that can cause anxiety and isolation:

People with autism feel “I am not going to cope because I don’t know what is going to happen”.

Anxiety like this can cause people to withdraw from any social contact.

Young carers face multiple barriers to engaging with services. One respondent told us about a young carer who wouldn’t attend support sessions because she didn’t wish to leave her parent alone. Other young carers travelling in from surrounding villages rely on volunteers to drive them to and from support sessions. If their driver is indisposed, they can’t attend.

Page 26

Disability The impact of disability on communication is a huge barrier and can lead to an individual avoiding or withdrawing from social situations:  people who have a sensory impairment often find it difficult to communicate. Those with a visual impairment are unable to read the cues. They do not know whether someone is talking to them and may not recognise someone’s voice; they cannot read body language or facial expressions; they may not maintain direct eye contact when speaking with someone; they may feel anxious and self-conscious about eating or drinking in public and may withdraw to avoid this anxiety. So even in a group setting they can become isolated.  people with a hearing loss can become withdrawn and struggle to engage. Lipreaders or people who are hard of hearing may be able to operate much of the time but may avoid group settings because it is hard work to communicate if someone has a strong accent or a beard or there is low lighting or background noise.  for a person who develops a hearing loss, these problems are compounded because they are unlikely to be proficient lipreaders. Suddenly they are unable to use everyday communication tools such as the telephone. It is hardest for those who do not belong to another community (eg a faith group or a knitting circle) where the bonds already established between members can cope with a hearing loss (similar for a person who is visually impaired).

Parents of a child with challenging behaviour often find that there is little understanding or acceptance of their child’s behaviour by others.

I was already anxious about taking my son to the GP

because I knew he would react badly. Sure enough, he

kicked off and I had to put up with the looks and tutting of

other people in the waiting room. I avoid the GP surgery

like the plague, but sometimes it just has to be done.

Gender Often, men are vulnerable to social isolation because they may not admit that they need help until there is a crisis. What is unclear is whether some men make a positive choice to live solitary lives or if in some instances this is forced upon them because they find it difficult to make social contacts.

There is anecdotal evidence that male veterans can find it difficult to build social relationships with civilians and can find an organisation like Men in Sheds very helpful, as they can regain the type of social relationship they had in their military careers. This does highlight, too, that men would like activities that are different to those that women enjoy but which are not as readily available. One respondent told us that rather than putting on a monthly tea party, there is a small group of men who are taken by a volunteer driver to the pub.

Page 27

Language / culture For members of ethnic minority communities the issue can be a cultural one, such as not understanding British conventions and norms and/or a language barrier. This makes it difficult to arrange visits to the GP, hospital or other services if their family is not available to act as interpreter. One organisation reported on the risk of social isolation for foreign women who have married British men and are now in an abusive relationship. Not only are they isolated because of a language barrier but also because they have different customs (an example given was Polish people celebrating Christmas on 24th, not 25th, December).

Page 28

Not accessing what is available Participants were asked to reflect on why they believed that groups that they had identified as at risk of social isolation might not be accessing the support and other services available.

The most commonly expressed view was that a significant barrier was just not being aware of the support available, and how it could help them. “I didn’t know you existed” (a carer). Beneficiaries of their services are generally referred by a third party or have self-referred as a result of their own investigations. But it is often only when a crisis occurs that the referral happens.

There is little outreach being undertaken into the wider community although some (eg village agents) are very much based in their local community.

One organisation providing support to individuals experiencing abuse is currently researching why members of the LGBTQ community are not accessing its services. This organisation feels that individuals from the

Page 29

LGBTQ community may be more at risk of social isolation than their other beneficiaries.

During the conversations, a whole range of other possible reasons were identified.

It’s a matter of choice Some people are used to being on their own and feel fine about it.

People can’t be bothered There is a lethargy that comes with depression. Others put it down to a tendency to become lazy.

Pride and a desire to remain independent This was particularly so for older people. For some, seeking help would be accepting charity. Many are loathe to even admit that they are isolated or lonely. If they find themselves in a caring situation, they often try to find their own solutions.

Fear of repercussions Older people may be worried that to ask for help may be seen as ‘not coping’, and they will be moved into residential care. Young carers may be similarly worried that they will be put into care if their true situation becomes known. Carers may worry that if they express their true feelings it will be taken up as a safeguarding issue. One respondent said “carers need to ‘offload’ in a safe environment. They need to be able to say ‘I could have put a pillow over his face at that point’ without the authorities being alerted.”

Desire to keep a condition or situation secret This can be, for example, because of stigma (HIV or transgender; families of prisoners), not wishing to hurt family or friends or feeling that they are socially unacceptable. One respondent talked about an adult that she supported. After a particularly emotional conversation, she asked the client’s permission to give her a hug. The client paused for a long time, and then agreed. She said that she hadn’t allowed anyone to touch her for 20 years because she thought she was unacceptable.

Lack of trust / having been let down in the past For example, if a young person feels that they have been failed by one service, they will not seek help from elsewhere but will withdraw and then be at risk of self-harming or depression. “A young transgender person can be devastated, even suicidal, if they are rejected for gender reassignment treatment or surgery.”

Technology Participants stressed that not everyone can use the computer or search the internet. This is often a generational thing, particularly for those who did not use computers in their workplace. However, as people age, even if they have been used to the technology, they may struggle because of short term memory loss and reduced dexterity. Slow broadband speeds in rural areas

Page 30 are a barrier and a frustration for everyone. However, for adults with a learning disability, just coping with the technology of day-to-day life can be challenging. One respondent talked about how difficult it is for people with learning difficulties to use an automated telephone system [press 1 for x, press 2 for y] to make a GP appointment.

Not necessarily the right time Individuals have to be ready to engage and on their own terms. Some people may not be ready to engage even when offered the opportunity. One respondent talked about parents of disabled children being in denial when faced with a devastating diagnosis for their child, and it may take some time before they are ready to start their journey.

In a personal communication from Ros Willis, an academic at Southampton University, she wrote “…it has been shown that people from South Asian backgrounds do need and want help to continue providing care but they may wait until crisis point before they ask for it. This can lead to a situation where a service might offer help in the relatively early stages and it is refused, but it may well be accepted later down the line. If it is never offered again after the first refusal, then that family will not be able to cope”.

Not recognising or acknowledging a need If an individual does not know (or acknowledge) that they are socially isolated or that they do have support needs, where do they find out about support? A number of participants remarked that older carers tend to be those who are at risk of social isolation because they do not identify their new role and they are not seeking information or support. The older generation (80+ year olds) was identified as being harder to reach and encourage to accept help. They are often worried about the cost of receiving support even if the support is free of charge. However, a child who is a carer often does not acknowledge this role or does not want to be labelled as such. Their role and their support needs are unlikely to be picked up by schools.

Unsuitable or inappropriate services / activities  Many of the activities and interventions seem to be aimed at women (social groups, tea parties, knit and natter).  Perceptions that they are for older people (whether or not this is the case).  Even if activities are not specifically aimed at older people (eg healthy walks) it is the older generation that tends to participate. Young adults with learning disabilities are put off many activities because the membership is older.  For the older age group it might be a case of the activities or the club not appealing – some would like contact in the home or buddying; most older old women are more comfortable in small group meetings where they can get to know each other.  Men don’t want to go to activities dominated by women, partly because they might not fit in, but they may also be concerned in case it appears they are ‘looking for a woman’.

Page 31

Unhelpful titles “The term hard of hearing makes you think of old people”. It is highly unlikely therefore that younger people who are hard of hearing or deafened will access services because they think they will not be for them.

Other people’s attitudes There is a belief that some health professionals and care workers have an outdated view of HIV and the stigma that surrounded the 1980’s campaign.

Lack of confidence It can be intimidating to go to a centre or activity session for the first time. Even if an individual, for example an adult with a learning disability or someone for whom English is not their first language, is introduced to the organisation and to group members, they may not have the confidence to come back on their own. Some women will only attend activities if their husbands are also attending.

Gender barriers Many respondents talked about the challenges of encouraging men to seek help. A number of different potential reasons were put forward to explain this scenario:  many services are either designed for, or dominated by women. Men are often seeking male companionship.  there’s an element of ‘to endure’ is a badge of honour  to find support requires an action, which requires showing other people something about yourself and potentially opening yourself up to their judgement  pride - to seek help is a sign of weakness  they hope something will just turn up  breaking the mould and developing new habits. If your wife has always arranged your social life, it’s hard to change those ways.  many men are used to having most things done for them. They go out to work and earn money, but everything else is arranged for them, from booking a holiday to writing Christmas cards.  men often prefer to communicate with others while they are doing something else. They may interact best while alongside someone else working on a shared activity.  most men are reactive. They will react to a practical problem, eg the lawnmower is broken, but may not have the emotional wherewithal to diagnose that their social isolation is a practical problem that can be fixed.  men like to ‘do’, not chat  one respondent said “if it’s sorted out, you don’t get to feel sorry for yourself”.

Practical reasons This could be any number of things such as:  no childcare available  no alternate care available  transport - none available, cost, not being able to manage public transport

Page 32

Ethnic minority communities Virtually all organisational respondents proactively volunteered the information that they had few (if any) clients from minority ethnic communities. Respondents assumed that there were cultural reasons for this, perhaps specific attitudes towards certain conditions and disabilities. There was also a belief that family / community provide the informal support that people need and that the communities had their own groups and support networks.

Further investigation suggests, however, that this is not the case. Ros Willis, from the Gerontology Department of University of Southampton, has carried out extensive research into BME informal support provision and writes that there are “…few ethnic group differences in instrumental support once need and enabling factors were taken into account. Such findings are contrary to the belief that minority groups exchange more informal support.”4

4 Willis, R., Price, D., & Glaser, K. (2013). Ethnicity as a determining factor for instrumental support in mid and later life in England and Wales

Page 33

Impact of social isolation

The literature search identified links between social isolation (and those considered at risk) and mental and physical health and wellbeing problems.

Participants gave consistent messages about anxiety, depression, mental health issues, addiction, eating disorders, self-harm, and suicidal thoughts and attempts. Other areas that were highlighted during the conversations are set out below.

The downward spiral This was a recurrent theme.

Low moods have a knock-on effect on the desire to eat well, remain active and take medication regularly.

After a fall, lost confidence can lead to reduced activity resulting in a gradual withdrawal into social isolation.

A socially isolated person may have less incentive or no peer pressure to curtail damaging behaviours such as excessive alcohol, smoking or unhealthy eating.

A visually impaired person may stay indoors to avoid awkward or intimidating situations and become demotivated to involve themselves in “life”.

The revolving door This scenario can be witnessed in various situations.

Older people living alone may use a medical problem as an ‘excuse’

to go to their GP when the real issue is feeling low and depressed.

The medical problem is treated but the individual returns to the same

situation and ultimately history repeats itself.

Apathy and /or depression can lead to a vicious circle of social

isolation for older people. By not going out, individuals can lose their

ability or desire to interact and find it more difficult to communicate.

Ex-offenders whose drug problem or mental health issue was

addressed in the prison environment, can easily revert to a pattern of

harmful behaviour. In some cases they will repeat the behaviour so Social isolation by association they return to prison where they feel safe.

Page 34

Social isolation by association In some situations, family members can be at risk of becoming socially isolated by “association” and rejected and shunned by the wider community.

“By association” can be found in a sensitive situation such as gender identity issues but is also experienced by some parents of children with complex and challenging needs and the families of convicted prisoners. Feelings of depression and suicidal thoughts are common.

Neglecting own health and wellbeing In conversations with organisations involved with carers (young and adult), there was a recurrent theme that many of them neglected their own health and wellbeing needs. As one person said, “they haven’t got time to be ill”.

Adult carers, if there is no one to provide alternate care, are unlikely to visit the GP, attend screening or hospital appointments.

Frustration and anger is a common occurrence for a carer if there is no “safe” outlet. This can lead to blaming the cared-for person for not letting them have their own life. In extreme cases this can result in physical or emotional abuse.

There is a high level of depression where a carer cannot socially interact with the person they are caring for and there is little communication.

Anecdotal evidence suggests that young people who have a caring

responsibility are more likely to be overweight, perhaps because they

are fending for themselves and not able to nourish themselves properly.

People with autism have a high incidence of mental health issues. One

challenge is being able to receive and respond to help. They may not

seek help from the GP because of the anxiety surrounding such a visit.

People with little knowledge of the English language may need a family

member to interpret for them. There may be practical or emotional

reasons why this is not always possible, or accessed.

Page 35

Not developing coping strategies for wellbeing If isolated and not able to meet others in a similar position, people do not have the chance to share experiences and ways of coping.

The wellbeing of carers and that of the person they are caring for can be improved by learning the hints and tips that other people have already developed. One example is a simple alarm system which allowed the carer to sleep peacefully knowing they would be woken if the cared-for person got out of bed.

‘Chicken and egg’ During conversations, the view was expressed that it is not always obvious whether it was social isolation that resulted in poor or deteriorating health or vice versa. The truth is probably that it depends on the context, and one exacerbates the other.

A frail elderly person may become socially isolated as a result of their health problems (limited mobility, no longer driving, have to be near a toilet, use oxygen, have a hearing loss) and just give up on seeking company because it’s too complicated and tiring.

Conversely, someone may be socially isolated because of their caring responsibilities. They don’t talk to others about their situation, and don’t know about the respite and financial help available. They get depressed and lack the motivation to care for themselves properly. They can’t face the organisation involved in visiting their GP. Thus they start down the road to poor physical and mental health.

The link can be circular. A homeless person may be referred to a nightshelter and the ‘homeless network’. Here s/he can find camaraderie and connection. But their substance abuse and mental health problems are so severe that they are not accepted at shelters and are not able to access the informal networks, resulting in greater social isolation and escalating health problems.

Page 36

The scale of the problem

There was little concrete information available about the (actual or estimated) scale of social isolation in the Mid Hampshire area. None of the organisations who took part in the interviews were aware of any relevant research, or had undertaken research of their own, but responses ranged across:

“Those accessing our service aren’t necessarily those who

are most at risk. We don’t know the scale”

“We believe there are a lot of older people who are

experiencing social isolation but we don’t know where they

are”

“Numbers are small and hidden and not much is known”

“All our work focuses on social isolation”

“We know that the risk of social isolation is high for carers but

we haven’t yet tried to quantify it”.

Social isolation was not always perceived as an issue for specific client groups. Instead, the organisation’s focus was very much on working with individuals to develop the person-centred support that they needed. Inevitably, this results in focusing on those who are referred or who self-refer rather than seeking to engage with those who are not accessing the service.

With increasing funding pressure, services are often at capacity (or over) with the numbers of people that currently present. Many are worried that if they actively promote their service, the floodgates will open and they will be overwhelmed. So the service is known only to a small number of people.

It is clear that by the nature of a condition, a disability or an individual’s circumstances, the risk of social isolation is often present, eg those with autism, ex-offenders, carers, recent migrants.

One of the challenges of trying to quantify the scale is that people do not always see themselves as socially isolated. For example, someone who is providing informal care for their partner may not be aware that their role has gradually changed or even that over time friends and family are withdrawing.

Page 37

Interventions

Participants cited a range of interventions that they felt were successful in supporting people struggling with social isolation. These are presented as an appendix to this report. They are stated as they were told during the conversations and have been grouped under six headings. We have made no comment on the quality of the provision described because it is not within the scope of this work to evaluate effectiveness.

The six headings are: 1) befriending initiatives 2) providing opportunities for appropriate social interaction 3) providing practical skills to cope with the situation 4) working with individuals 5) outreach support 6) cheap and innovative ideas from elsewhere

The common themes spoken about were face-to-face contact, social interaction and participation, meeting need in an appropriate way, and providing outreach support in sensitive or remote situations

Further details about the above can be found at Appendix 4.

Page 38

The future

Respondents’ views about the future demonstrated an unusual degree of uniformity.

Respondents felt that the risk of social isolation would increase given an ageing population, pressures on work / life balance, the caring responsibilities of the ‘sandwich generation’, and funding cuts and their impact on the delivery of public sector support services.

The most significant concern highlighted, related to the increasing emphasis on the contribution that volunteers can make to the future delivery of services that more vulnerable or highly dependent people in society need. The respondents questioned where this army of volunteers will be found. Many volunteers are elderly and there is little evidence of a pipeline of younger volunteers coming forward.

Our volunteers are great, but they’re getting older and find things quite tiring. I’m 76 myself. About half our volunteers are in their 80s – they’re older than some of the attendees. We are trying to find new younger blood to replace them, but no luck so far. Younger people don’t seem to be coming forward to help.

Recruiting, retaining and managing volunteers (well) is a highly skilled job that has a cost in terms of time, energy and resources. Respondents were not sure that their organisations would have the capacity to recruit, retain and manage the larger numbers of volunteers to provide the level of care and support that will be needed.

Page 39

Further discussion and points / suggestions for consideration

All those we spoke to recognised that the risk of social isolation is a significant issue for their target beneficiary groups. There was less agreement about how to identify, reach and engage with those who were experiencing social isolation. Based on our conversations, there are a number of areas outlined below that we believe could benefit from further consideration. These are not presented in any order of importance nor as formal recommendations. a) There does appear to be a link between social isolation / loneliness and health and wellbeing but not it is not always clear which comes first - the ‘chicken and egg’ scenario. For example, poor mobility can prevent you getting out which means you sit at home, resulting in the potential to become socially isolated. Alternatively, if you are feeling alone and isolated for some reason, you may remain at home not venturing out, which then contributes to the poor mobility. Social isolation is also known to be both a cause and an effect of poor mental health - an individual may increasingly cut themselves off, and thus face more mental distress; with more mental distress, they then choose to isolate themselves. b) Few of the organisations we spoke to have undertaken any work focusing specifically on social isolation. Given that they recognise that the risk is significant for their beneficiary groups, it would be useful to encourage and support voluntary and community groups to make social isolation an overt part of their remit.

We found that organisations tend to be addressing the specific condition or circumstances of an individual. Undertaking guided conversations (or a similar approach) with beneficiaries could lead to a better understanding of whether social isolation is a risk factor for them. Organisations may require training to run a guided conversation. c) Making Every Contact Count (MECC) is a well-known initiative within the health sector. Consideration could be given as to whether MECC could incorporate the issue of social isolation. Encouraging health professionals and voluntary and community sector organisations to tease out issues of social isolation could help to identify, for example, individuals who are providing informal care but who may not see themselves as a carer. It would also be an opportunity to explore lifestyle issues and what people could do to help themselves. d) From the observations in this study, there does appear to be less social isolation in rural areas because residents are supporting vulnerable people in the community through informal networks of care. But this perception needs to be balanced with the view that people do not

Page 40

always want their neighbours to know the details of their lives – they want a degree of privacy. Perhaps rural social isolation is equally prevalent, but more hidden. e) Agencies should be careful not to over-depend on digital services as a substitute for face-to- face contact. Online services are not a universal solution, particularly for older people unfamiliar with the technology or who prefer the reassurance of face- to- face contact. There can also be barriers for other groups in accessing technology, such as low income or slow broadband speeds in rural areas. In addition, within the Deaf community, online access works well for English language users but not for British Sign Language users because literacy levels tend to be low. f) Men are more reluctant to recognise and admit that they need help and are not engaging with many of the social activities and groups currently available. More could be done to engage with men, particularly those who have retired, who are on their own or who are carers, and to identify what they would like to do and the type of support they would like to be in place. g) Medical advances mean that HIV+ status no longer has the stigma that was once associated with this condition. Individuals who are HIV+ can live in the community, manage their health issues and no one needs to know. However, there are indications that people might have less positive experiences if they find they need domiciliary or residential care. We were told that for LGBTQ people, those with HIV+ status and transgender adults, there is a great deal of anxiety and fear associated with receiving care at home or having to go into a care home when they have to disclose their condition or situation to others. We were given the example of other residents/staff withdrawing from one such individual. This could also, for example, apply to LGBTQ people with dementia or a learning disability, who ‘come out’ within the setting of a care home. h) Private businesses could become part of the solution. For example, during another piece of research, we came across several frail elderly men who said that they love fly fishing but can’t do it any longer because there is too much walking and carrying involved. If private fisheries are aware of this market and their requirements, they could create solutions that benefit both their business and the community. i) Enabling carers to access appropriate ‘respite’. This could relate to: finance – ensuring that carers receive the allowances they are entitled to; flexibility – helping to ensure that ‘sitting services’ are able to provide flexible support; existing drop in services – enabling carers to

Page 41

leave their ‘caree’ for a short while at a drop-in session while they have their GP appointment or do their banking. j) Consideration could be given to the potential role of GP surgeries in the move to address social isolation:  sometimes people can jeopardise their health and become more isolated because of anxiety about going to a GP surgery. Practical actions that could reduce anxiety include the use of visual prompts, or facilitating patients with autism or a learning disability to access the waiting room at less busy times.  having someone within the surgery acting as the lead or champion on carers’ issues, who would be able to refer or signpost as appropriate, for example linking into a local village agent, or carers’ support group.  being part of a social prescribing project; as well as signposting to support and activities within the community, this can also open up a route into volunteering. Many people like to feel valued and able to make a contribution. A social prescribing scheme in Portsmouth received a referral for an older patient who was experiencing loneliness and social isolation. The initial suggestion was to link her with a befriending scheme, but she absolutely did not want this. So it was suggested that she might like to be a volunteer within a charity shop; a suitable opportunity was found and the patient hasn’t looked back, enjoying doing something useful and making a new circle of friends. k) There could be a role for support groups who would help people who become isolated by association. For example, parents of disabled children can find themselves shunned by others; partners and family members of HIV+ people, LGBTQ individuals or even those with mental health problems, may distance themselves from that person, or even find others withdrawing from them because of a perceived stigma and lack of understanding. A better understanding of the situation and condition could go a long way to addressing social isolation. l) Although the literature review found that social isolation is cited as being a common experience for homeless people, this has not necessarily been borne out by this study. Perhaps this just illustrates the issue locally, but with homelessness and rough sleeping on the rise, it could become more of a problem. m) It would be worthwhile conducting more in-depth investigation with ethnic minority communities in Mid Hampshire, including the Nepalese community, to better understand whether the assumption that many ethnic minority communities “look after their own”, explains why there is little engagement with the existing support agencies. None of the organisations we spoke to had engaged with ethnic minority communities.

Page 42

If you do not speak English, this is also an additional barrier to approaching, or even knowing about, a service that ‘works in’ English. n) Many interventions do not involve active participation or input from beneficiaries. They may also not be what people want. We were told that the priority for members of the Nepalese community is to learn sufficient English to be able to get around and to communicate more easily rather than combining this with other activities, such as singing or crafts. It is not surprising that people have introduced more ‘creative’ approaches to acquiring language skills in order to attract funding, because funding for English language classes has been cut, but if it is not what people want, they drop out and remain isolated. o) The main concerns expressed by not-for-profit organisations regarding the future relate to resources, both financial and human, to cope with what is presumed will become an increasing issue in light of the ageing population and a changing society. With funding cuts still being implemented and statutory agencies looking to voluntary and community groups to fill the gaps, participants were not optimistic and questioned their capacity to continue to provide support services.

This reflected the findings of a small study of local lunch clubs carried out by Action Hampshire in 2015 to identify the challenges that they faced and their future support needs. We met with nine clubs that were supporting approximately 300 people every week. Four key themes emerged:  shortage of volunteers and difficulty recruiting new, younger (under age 75) volunteers. (During the social isolation study we heard that some adults with learning disabilities volunteer at lunch clubs but this does rely on other volunteers being prepared to provide the necessary support.)  funding, in particular for transport. Very small amounts are required to enable sustainability.  many members in their 80s and 90s are very frail and for some, the weekly lunch club was the only time they went out and many lived alone.  few men attended lunch clubs. p) Concerns were also expressed about short term thinking and funding, meaning that interventions and projects never really have a chance to succeed or prove their effectiveness. Projects need more than 12 months to demonstrate their impact. q) Addressing social isolation is a huge challenge and needs to be ‘everyone’s business’, crossing the generations. There is a perception that agencies are not talking to each other, and that provision is not joined up; examples given by participants were that housing, health and finance could work better together, as could social care, health and education.

Page 43

Agencies working together, and not within organisational silos, could start the process of thinking more creatively, helping to support – but not organise - connected communities. Health and Wellbeing Boards could be a launchpad for challenging agencies to think about how their work interacts and impacts with each other. r) It is not necessarily the people who are at risk of, or who are, experiencing social isolation who are currently being reached.

Page 44

Bibliography

ACRE and Oxford Consultants for Social Inclusion (OCSI). Evidencing Rural Need. http://www.rural-evidence.org.uk/home/ (accessed Sept 2016)

Audit Commission. Don’t Stop Me Now. Preparing for an Ageing Population. http://www.cpa.org.uk/cpa/Dont_Stop_Me_Now.pdf (accessed Oct 2016)

Author and date unknown. Loneliness and Isolation in Older People. http://documents.hants.gov.uk/public-health/jsna- 2013/LonelinessandisolationinolderpeopleJSNA2013.pdf (accessed Oct 2016)

Beach, B and Bamford, SM. Isolation: the emerging crisis for older men: a report exploring experiences of social isolation and loneliness among older men in England. Independent Age and International Longevity Centre https://www.independentage.org/policy-research/research-reports/isolation- emerging-crisis-for-older-men (accessed Dec 2016)

Campaign to End Loneliness and Age UK: Promising approaches to reducing loneliness and isolation in later life. http://www.campaigntoendloneliness.org/wp-content/uploads/Promising- approaches-to-reducing-loneliness-and-isolation-in-later-life.pdf (accessed Nov 2016)

Campaign to End Loneliness and University of Kent. Hidden Citizens. How can we identify the most lonely older citizens? http://www.campaigntoendloneliness.org/wp-content/uploads/CEL-Hidden- People-report-final.pdf (accessed Oct 2016)

Carers Trust and The Men’s Health Forum. Husband, Partner, Dad, Son, Carer? A survey of the experiences and needs of male carers. https://www.menshealthforum.org.uk/sites/default/files/pdf/male_carers_resea rch_report.pdf (accessed Oct 2016)

Carers UK. Alone and Caring: Isolation, loneliness and the impact of caring on relationships. http://www.carersuk.org/for-professionals/policy/policy- library/alone-caring (accessed Oct 2016)

Children’s Commissioner. Young carers. The support provided to young carers in England. https://www.childrenscommissioner.gov.uk/sites/default/files/publications/You ng%20Carers%20report%20December%202016.pdf (accessed Oct 2016)

Commission for Rural Communities. Social Isolation Experienced by Older People in Rural Communities. http://cdn.basw.co.uk/upload/basw_111815- 1.pdf (accessed Oct 2016)

Page 45

Co-op and British Red Cross. Trapped in a Bubble. An investigation into triggers for loneliness in the UK. http://www.redcross.org.uk/~/media/BritishRedCross/Documents/What%20we %20do/UK%20services/Co_Op_Trapped_in_a_bubble_report_AW.pdf (accessed Oct 2016)

Defra. Rural Ageing Research Project. Summary Report of Findings. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/ 314646/ukafa-rural-ageing-research-2013-presentation.pdf (accessed Oct 2016)

Dwyer, P and Hardill, I. Promoting Social Inclusion? The impact of village services on the lives of older people living in rural England. Ageing and Society 31. 2011. http://usir.salford.ac.uk/12787/2/PROMOTING_SOCIAL_INCLUSION.pdf (accessed Oct 2016)

Hampshire Public Health Team. Social Isolation and Loneliness in Hampshire. A Health Needs Assessment. Source not found (received as private correspondence)

HM Government. Putting People First: a shared vision and commitment to the transformation of adult social care. http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov .uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalass et/dh_081119.pdf (accessed Dec 2016)

Holt-Lunstad, J; Smith, TB; Baker, M; Harris, T; Stephenson, D. Loneliness and Social Isolation as Risk Factors for Mortality: A meta-Analytic Review. Perspectives on Psychological Science 2015. Vol 10(2) 227-237. http://journals.sagepub.com/doi/10.1177/1745691614568352 (accessed Oct 2016)

Kroenke, C; Kwan, M; Neugut, A; Ergas, I; Wright, J; Caan, B; Hershman, D; Kushi, L. Social networks, social support mechanisms, and quality of life after breast cancer diagnosis. Breast Cancer Research and Treatment June 2013, Volume 139, Issue 2, pp 515–527. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3906043/ (accessed Oct 2016)

Lancashire County Council. Hidden From View: Tackling Social Isolation and Loneliness in Lancashire. Public Health Report. http://www.lancashire.gov.uk/lancashire-insight/health-and-care/mental- health-and-wellbeing/social-isolation-and-loneliness.aspx (accessed Dec 2016)

Marmot Review Team. Fair Society, Healthy Lives, Strategic Review of Health Inequalities in England post-2010. http://www.instituteofhealthequity.org/projects/fair-society-healthy-lives-the- marmot-review (accessed Oct 2016)

Page 46

MIND. Not Alone? Isolation and Mental Distress. Source not found (received as private correspondence). Orsmond, G; Shattuck, P; Cooper, B; Sterzing, P; Anderson, K. Social Participation Among Young Adults with a Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, November 2013, Volume 43, Issue 11, pp 2710–2719. www.ncbi.nlm.nih.gov/pmc/articles/PMC3795788/ (accessed Oct 2016)

Public Health England and UCL Institute of Health Equality. Local action on health inequalities. Reducing social isolation across the lifecourse. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/ 461120/3a_Social_isolation-Full-revised.pdf (accessed Oct 2016)

Steptoe, A; Shankar, A; Demakakos, P; Wardle, J. Isolation, loneliness and all-cause mortality in older men and women. Proceedings of the National Academy of Sciences of the United States of America. Vol 110. No. 15. 5797- 5801. http://www.pnas.org/content/110/15/5797.full (accessed Oct 2016)

Valtorta, NK; Kanaan, M; Gilbody, S; Ronzi, S; Hanratty, B. Loneliness and social isolation as risk factors for coronary heart disease and stroke: systematic review and analysis of longitudinal observational studies. Heart 2016; 0:1-8. http://heart.bmj.com/content/early/2016/03/15/heartjnl-2015- 308790.full (accessed Jan 2017)

Valtorta, N and Hanratty, B. Loneliness, isolation and the health of older adults: do we need a new research agenda? Journal of the Royal Society of Medicine 2012: 105: 518-522. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3536512/ (accessed Jun 2016)

WRVS, The Centre for Citizen Participation (Brunel University), Centre for Social Action (De Montfort University). Involving Older Age: the route to twenty-first century well-being. http://www.royalvoluntaryservice.org.uk/Uploads/Documents/SoA_Closingproj ectreport_final_web_v2.pdf (accessed Oct 2016)

Willis, R; Price, D; & Glaser, K. Ethnicity as a determining factor for instrumental support in mid and later life in England and Wales. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 68(2), 278–289

BBC Radio 4. You and Yours. 23 January 2017.

Page 47

Appendix 1: Social isolation: a national and local priority

Growing evidence that loneliness and social isolation directly influence health and wellbeing outcomes has highlighted the need to address these issues as a priority. There is a strong imperative to address social isolation, providing early intervention wherever possible, and this can now be seen in policies and strategies both at national and local level.

 Putting People First: a shared vision and commitment to the transformation of adult social care (HM Govt 2007) stated “the alleviation of loneliness and isolation to be a major priority”.

 July 2008, Don’t Stop Me Now, the Audit Commission’s review of the preparedness of local councils for an ageing population, reiterated the importance of tackling social isolation as a cause of dependency.

 The importance of loneliness and social isolation in the promotion of health and wellbeing and in tackling inequalities was reinforced in the Marmot Review: Fair Society, Healthy Lives. “Individuals who are socially isolated are between two and five times more likely than those who have strong social ties to die prematurely”.

 In November 2013, a government map of isolation in adults using social care was produced by Public Health England. It found that between 2010 and 2011 57.7 % of those questioned were not getting as much social contact as they wanted.

 Public Health England and UCL Institute of Health Equity. Local action on health inequalities: reducing social isolation across the life course. Sept. 2015.

 The Campaign to End Loneliness was set up in 2011 to ensure that loneliness is acted upon as a public health priority both at national and local level.

 The launch of the Jo Cox Commission on loneliness and social isolation at the end of January 2017 brings together a number of partners to help tackle this persistent issue. Research shows over nine million people say they are “always or often lonely”, but two-thirds of those would not talk about it in public. The huge challenge facing us all is to reach those who are: “hiding in attics, socially isolated”.

This increasing interest at national level to address social isolation and loneliness is also reflected at a more local level within the county of Hampshire.

Page 48

 The Joint Strategic Needs Assessments (2015) for Winchester City Council, Test Valley Borough Council and East Hampshire District Council and the Hampshire Public Health Team report that although they recognise that there is evidence to demonstrate that isolation at any age can cause poor health, the actual scale of the problem is unknown. It is important to identify people at risk of loneliness and isolation in order to target services more effectively.

 The Hampshire Health and Wellbeing Board is interested in looking at this issue. At a workshop on 27 September 2016 to identify work programme priorities, participants discussing the “Ageing Well” theme identified social isolation as the highest priority; those looking at “Healthy Communities” identified three priority areas, one of which was social isolation. The challenge is who / how many; where they are; and the actual cost.

 The growing use of social prescription projects, whereby GPs can signpost people to voluntary and community resources, can also be said to be addressing social isolation issues.

Page 49

Appendix 2: Background to the study and full methodology

Social isolation is an issue that is receiving increasing attention from public health professionals, GPs, social care agencies and the not-for-profit sector. A wealth of data now exists indicating that social isolation has a negative impact on an individual’s health and wellbeing, resulting in increased pressure on health and social care resources and budgets.

Social isolation occurs when a person is separated from social contact, community involvement or access to services. It also includes having poor quality social contacts. Although we can measure the number of social contacts a person has or how much they are participating in social activities, it is less easy to measure the quality of their contacts.

The challenge is that social isolation is by its nature largely a hidden issue. People do not always realise, and in some cases do not admit, that they are experiencing social isolation. Consequently it is hard to know who and how many are affected, where they can be found and the actual costs to health and social care systems.

This study was undertaken by Action Hampshire. It was commissioned by the Mid Hampshire locality of the South Hampshire MCP (Multispecialty Community Provider) vanguard who wants to understand better the nature of social isolation in the Mid Hampshire area and its impact on local residents.

The study is focused on providing a real life picture from those organisations and individuals working with, or having knowledge of, groups of people who may be at risk of experiencing social isolation.

This report does not seek to make formal recommendations. It sets out to present the viewpoints, perspectives and opinions of individuals and a range of not-for-profit organisations. What this report provides, therefore, are specific insights into social isolation and its impact on specific groupings of people. What is reported may not be absolute reality, but a version of reality filtered through the perceptions and views of the not-for-profit organisations and individuals who have relevant experiences and expertise.

The traditional viewpoint is that social isolation is largely associated with older people, particularly those living in rural areas. One aim of this study was to try and show the diversity of groups and individuals that are considered at risk. Given that Mid Hampshire includes a large number of villages, another aim was to investigate whether there is a rural dimension to social isolation in this locality.

The work was carried out through a combination of desk-based research and fieldwork. Semi-structured conversations were held with 20 not-for-profit organisations and 10 individuals between October 2016 and January 2017.

Page 50

Aims and objectives of the study The overall aim of the project was to contribute qualitative data to support and inform a better understanding of the scale of social isolation in the Mid Hampshire area and the impact that this has on local residents, in particular their health and wellbeing.

Specifically the study aims to try and answer these questions:  what are the impacts of social isolation on health and wellbeing?  what social groups are likely to be most at risk of social isolation?  are the characteristics of social isolation the same across all social groupings identified?  is there a rural dimension to social isolation in Hampshire?  how can social isolation and its negative impacts be minimised?  what good practice is occurring to minimise social isolation and its negative impacts, with particular reference to voluntary and community organisations in Hampshire?  what interventions do voluntary and community organisations believe would be effective in reducing social isolation and its negative impacts?

What do we mean by social isolation? For the purposes of this study, we are using the following definition of social isolation:

Social isolation occurs when a person is separated from social contact, community involvement or access to services. It also includes having poor quality social contacts.

Or, as put more succinctly by Beach and Bamford:

Isolation is being by yourself. Loneliness is not liking it.

Social isolation can be an issue at any age, but symptoms may differ according to age group. It is not always immediately visible.

It is important to note that social isolation is not necessarily the same as loneliness:

Loneliness is a personal subjective feeling of loss when the amount of social contacts you have is less than you desire either in terms of quality or quantity. The causes and consequence relate to the individual’s own needs, wishes and feelings.

Page 51

People can be lonely but not isolated and isolated but not lonely. Spending a great deal of time on your own can be a matter of choice and is not necessarily an indication of being lonely or socially isolated.

Somewhat confusingly, social isolation and loneliness, although not the same thing, tend to be used interchangeably in the literature. Much of the research that has been undertaken talks about addressing loneliness and social isolation (for example Campaign to End Loneliness and Age UK 2015) and many interventions are designed to tackle loneliness and social isolation rather than one or the other.

There are points where the distinction between social isolation and loneliness is blurred. Sensory deprivation (such as hearing loss), depression or cognitive decline can all create physical barriers to participation. The isolation that can then be experienced within a group setting can impact on the individual just as much as on people who are living alone and isolated.

Methodology This study focused on the collection of qualitative data, investigating perceptions, interpretations and experiences in a systematic and rigorous way. There were two stages to the study.

Desk research stage This was undertaken through internet searches and through reading of research papers, strategy and policy documents. This stage included a search for relevant demographic information for the Mid Hampshire area. The purpose of this stage was to:  understand social isolation in its broader context  agree a definition of social isolation to be used in the study  be aware of research previously undertaken  be acquainted with current thinking on the scale and impact of social isolation  identify relevant not-for-profit organisations to approach for the fieldwork stage

The findings of the desk research stage informed the second (fieldwork) stage of the study in which semi-structured conversations were held with representatives from a number of not-for-profit organisations.

Fieldwork stage The focus of this stage was on understanding and exploring participants’ views and experiences from their own perspectives. A series of conversations aimed to identify the scale and impact of social isolation as perceived by those working in the field. The study did not measure occurrences or use modelling approaches (for example MOSAIC) to estimate how many people are at risk and where they are located.

The fieldwork comprised a series of face-to-face and telephone conversations (depending on how participants wished to be involved). This was intended to

Page 52 be as interactive as possible and respondents were able to respond in their own words. Each conversation lasted between 30 and 60 minutes.

The desk research had shown that many previous investigations had focused on social isolation in later life, with notably less research on other age groups and situations. The organisations involved in this study were selected on the basis that their primary purpose was to work with people and groups that might be considered at risk of, or experiencing, social isolation. They were also chosen in the hope that each would bring a unique insight to the study reflecting their own knowledge, experiences, opinions and beneficiaries. A number of individuals who had first-hand knowledge of a particular condition or situation were also invited to participate (see Acknowledgements).

Based on the findings from the desk research and reflecting the objectives of the study, a semi-structured topic guide was drawn up to ensure that the same basic lines of enquiry were covered with each organisation. Each conversation, however, was conducted in a way that was flexible and able to respond to what was being said.

The participants were sent a briefing paper prior to the conversation. This paper explained that the following areas would be covered:  which groups are particularly at risk of social isolation and why?  health and wellbeing impacts of social isolation  engaging with “invisible” groups and individuals  is there a rural dimension to social isolation in mid Hampshire?  perceptions about the prevalence of social isolation within the group(s)  suggestions about the activities and interventions that participants considered particularly effective at addressing the problem

The topic guide included snowball sampling and interviewees were asked to suggest other organisations that might be able to contribute to the study. Although some of the suggestions were followed, timescales did not allow engagement with all of them.

The face-to-face conversations were recorded, transcribed as narrative texts and the recordings deleted. Notes were taken during telephone interviews and written up and reviewed immediately afterwards. All participants were assured that their words would be reported anonymously and were asked if they wished their organisation to be listed on an Acknowledgements page.

The conversations were facilitated by:  Jo Dixon, Senior Engagement Officer at Action Hampshire  Sonia Wilson, an Associate of Action Hampshire.

This is not intended to be a representative study or a statistical analysis. This study is about the experiences and perceptions of those who are working with individuals and groups considered as more at risk of social isolation, drawing upon their knowledge and intelligence.

Page 53

When all the conversations had taken place, the data in the narrative texts were analysed in order to identify patterns and common ground in experiences. A number of overarching themes were identified in this way. In addition, where there were obvious variations that could be linked to different target groups, these were also drawn out.

Page 54

Appendix 3: Literature review on the impact of social isolation on health and wellbeing

Much of the research and literature focuses on social isolation affecting older people. It is therefore anticipated that with an ageing population the scale of social isolation is likely to increase. This will be especially pertinent in the rural areas of Mid-Hampshire, which already have an older demographic than the national average.

Risk factors The following factors are usually identified as contributing to, or having an influence on, social isolation:

Individual Factors Life Course Transitions

Sexuality New / young / lone parenthood Ethnicity School experiences Age Becoming a carer (young or adult) Personality Retirement Moving into residential care Unemployment Divorce or separation Bereavement Moving to a new area Young care leavers Leaving armed services Acquiring a disability or chronic illness

Health, Wellbeing, Disability Wider or Social Determinants of Health Cognitive impairment Sensory impairment Domestic abuse / violence Substance misuse Long term unemployed Physical or mental ill-health Recent migration Disability High population turnover Poverty & deprivation Homelessness Stigma Transport Physical environment Technological changes Housing

These factors, in various combinations depending on the individual and their circumstances, can contribute to the risk of becoming socially isolated. For example, male carers who were unemployed or not currently working due to

Page 55 their caring role feel socially isolated, with 8 out of 10 saying that they feel they miss out on spending time socially with friends and family (Carers Trust and the Men’s Health Forum 2014).

Who might experience social isolation? Much has been written about the impact of social isolation (and loneliness) on health and wellbeing, particularly on that of older people. The Campaign to End Loneliness (2015)5 reported that five million people in the UK regard television as their main form of company.

However, it is recognised that people can be affected by social isolation at any age. Public Health England’s report (2015)6 documented how social isolation can negatively impact on an individual’s health and wellbeing at four key stages of life: pregnancy and early years; children and young people; working-age adults; retirement and later life. The risk factors are different for each stage (see table above).

In December 2016, the Co-op and British Red Cross7 published the results of an investigation into triggers for loneliness (the terms “loneliness” and “social isolation” are used interchangeably in this report). The two agencies chose to concentrate on six groups, as their own literature research had highlighted a gap in understanding the needs and experiences of these particular groups: – young new mums (18-24); individuals with mobility limitations; individuals with health issues; individuals recently divorced or separated (last two years); individuals living without children at home and retirees; individuals recently bereaved (6 – 24 months).

Moreover, we know that other groups are affected, eg:  research results that were released online in the Journal of Autism and Developmental Disorders (2013)8 found that over a 12 month period, 28% of youths with Autism Spectrum Disorder (ASD) were socially isolated with no social contact whatsoever. It was found that young adults with ASD were more likely to never see friends, never get called by friends, never be invited to social activities and be socially isolated.  Carers UK (2015)9 reports that becoming an informal / unpaid carer can make an individual vulnerable to loneliness and social isolation.  a new report from the Children’s Commissioner in January 201710 estimated that 4 out of 5 young carers receive no support. Although the 2011 Census identified 166,000 young carers aged 5-17 years old, local authorities only reported supporting 28,000.

5 Campaign to End Loneliness & Age UK: Promising approaches to reducing loneliness and isolation in later life. 6 PHE & UCL. Local action on health inequalities. Reducing social isolation across the lifecourse. 7 Co-op & BRC. Trapped in a Bubble. An investigation into triggers for loneliness in the UK. 8 Orsmond et al. Social Participation Among Young Adults with a Autism Spectrum Disorder. 9 Carers UK. Alone and Caring: Isolation, loneliness and the impact of caring on relationships. 10 Children’s Commissioner. Young carers. The support provided to young carers in England.

Page 56

So we would expand the list of those who are particularly at risk of becoming socially isolated to include, but not necessarily limited to:  older old (those over 80 years old)  new, young or lone parents  mothers of young children  carers (young & old)  people experiencing domestic abuse  lesbian, gay, bisexual or transgender  long term unemployed  people with autism, a learning disability or a behavioural problem (and their families)  those with a physical disability or long term condition (and their families)  people with a mental health condition (and their families)  minority ethnic and recent migrant communities  people experiencing poverty and deprivation  young people who do not conform to local norms of appearance, language, behaviour  homeless people  people with substance misuse problems  veterans  ex-offenders

Impact on health and wellbeing The desk research stage identified a whole body of research and evidence reviews that have tried to find associations between social isolation and physical and mental health problems. To reference them all would be unrealistic. What follows is intended only as an illustration of some of the deductions that academics and others have made.

Health Steptoe et al (2013)11 concluded that social isolation is associated with higher mortality but that the effect is independent of the emotional experience of loneliness. Although they recognised that both isolation and loneliness impair quality of life and wellbeing, from the findings it was concluded that efforts to reduce isolation were likely to be more relevant to mortality.

Holt-Lunstad et al (2015)12 analysed data from 70 studies (1980 – 2014). Using the aggregate data, they found that middle–aged adults were at greater risk of mortality when lonely or living alone than when older adults experienced those same circumstances. This, they concluded, is comparable to obesity which is now being taken seriously at all levels.

11 Steptoe et al. Isolation, loneliness and all-cause mortality in older men and women. 12 Holt-Lunstad et al. Loneliness and Social Isolation as Risk Factors for Mortality: A meta- Analytic Review.

Page 57

In December 2016, the journal Breast Cancer Research and Treatment published an update on research conducted by Dr Candyce Kroenke et al.13 The study indicated that socially isolated women had a 40% greater chance of breast cancer returning at a later date. In a study of 10,000 patients, factors such as having a spouse and engaging with relatives play a role in predicting a person’s long term survival from the disease as well as the number of friends and the amount of participation in community or religious activity.

The main findings from a systematic review and meta-analysis published in April 2016 (Valtorta et al)14 suggested that deficiencies in social relationships are associated with an increase in developing coronary heart disease and stroke (29% increase in risk of CHD and 32% increase in stroke). In response to this study though, the British Heart Foundation said that while it did suggest a physiological link, it is not a clear one and further research was needed. However, from its own observations, social isolation and having few social contacts can lead to poor lifestyle behaviours such as smoking, drinking or overeating which can in turn increase the risk of heart attack and disease.

Socially isolated and lonely adults are more likely to be admitted earlier to residential or nursing care, and are at greater risk of emergency admission and re-admission to hospital (Valtorta and Hanratty 2012).15

MIND’s survey (2004)16 reported that two thirds of people who experience mental distress in the UK reported that isolation was often a cause and/or a contributor to their mental health problems.

Wellbeing A research report looking at older people’s wellbeing (WRVS et al 2011)17 found that the most frequently mentioned contributors to wellbeing are relationships and social contacts that provide fun, support, feelings of belonging and being valued. The research also found that getting out and having a range of enjoyable activities and interests were also important and helped to divert attention from problems arising from ill health and impairments. Problems arising from poor physical health and impairments were seen as the main barriers to wellbeing.

A recent discussion on Radio 4’s “You and Yours” (23 January 2017) looked at postal scams and repeat victims. Keith Brown, Professor of Social Work at Bournemouth University, had visited a number of people who had been identified through “suckers lists”. He found that for many of these vulnerable people, the only reason to wake up in the morning was to wait for the post and the delivery of 10 – 15 envelopes to be opened and filled in. The interviewees

13 Kroenke et al. Social networks, social support mechanisms, and quality of life after breast cancer diagnosis. 14 Valtorta et al. Loneliness and social isolation as risk factors for coronary heart disease and stroke: systematic review and analysis of longitudinal observational studies. 15 Valtorta & Hanratty. Loneliness, isolation and the health of older adults: do we need a new research agenda? 16 MIND. Not Alone? Isolation and Mental Distress 17 WRVS et al. Involving Older Age: the route to twenty-first century well-being.

Page 58 were aware of what they were doing but explained that this gave them a reason to live as without it there was no interaction with the outside world. Not only were they losing large sums of money but many were also being targeted by a clairvoyant who promised to sort out their ill health.

A ‘chicken and egg’ situation is at play. Ill health and immobility that leaves people unable to socialise may lead to isolation and loneliness. Alternatively, loneliness and isolation may be causal factors for ill health, resulting in health- damaging behaviours such as drinking, substance abuse, smoking and overeating, especially if there is no one present to keep an eye on the individual, encourage them to reduce such behaviour, help if they collapse or fall, or take them to the GP if unwell. It is not straightforward to identify cause and effect, but it is clear that a correlation exists.

In summary then, literature suggests that there is a clear correlation between social isolation and relatively poorer health and wellbeing. Impacts include:  higher mortality  an effect comparable to obesity  socially isolated women face a greater risk of breast cancer recurrence  increase in likelihood of developing coronary heart disease and stroke  earlier admission to residential or nursing care  greater risk of emergency hospital admission and re-admission

The rural dimension Given that much of Mid Hampshire is rural, this study also set out to see if there was a rural dimension to social isolation. The significant factors are the age of those living in rural locations and access to transport and therefore to health, social care and other services that are delivered some distance from where people live. For older people in particular, a crunch moment is when either they or the main driver are no longer able to drive. A free bus pass is useless if there is no bus.

The Commission for Rural Communities (2012) reported that the older population is projected to rise, with those aged over 85 projected to increase by 186% by 2028 in rural areas, compared to 149% in the UK as a whole.

Within a rural location, social isolation is often less visible. Concentrated clusters are rare given the dispersal and the low density of population. However, depending on the nature of the local community, individuals at risk of social isolation in rural areas may, in fact, be receiving more informal support than their counterparts in more individualised urban communities, thus reducing their risk of isolation. Conversely, although there may be this circle of informal support, people in rural communities may go to great lengths to protect their privacy, and so remain invisible.

Defra (2013)18 reported that the picture for older people in rural areas was potentially a rosy one. They tend to have higher incomes, higher education

18 Defra. Rural Ageing Research Project. Summary Report of Findings.

Page 59 levels, lower rates of depression and higher levels of physical activity. Many of the residents in Defra’s study spoke of needing less from public services because they looked out for each other. However, there were suggestions that these informal networks might be weakening, eroded by an influx of new people who commute out for work and leisure purposes, shop online and have little time or inclination to get involved in community life. At the same time we are seeing the loss of communal meeting spaces, shops, post offices and pubs, which is not only reducing the opportunities for social interaction but also reducing the reason to go out. The digital world, and increasing use of the internet to provide information about services and support, is potentially excluding older people (the oldest old) who are often not internet literate.

In relation to young people, many rural households are some miles from the nearest secondary school. This makes it hard for young people to socialise with school friends, even more so if they have caring responsibilities and/or the family does not have access to private transport. Poor broadband speed or weak mobile phone strength can also isolate a young person who is unable to participate in the peer norms of electronic interaction with friends.

The local context The Mid Hampshire area has no specified boundaries, but based on a rough approximation of GP ‘catchment areas’ and corresponding wards, we estimate that there are approximately 210,00019 people living in the Mid Hampshire area, approximately 16% of Hampshire’s total population.

An analysis of the age structure of Mid Hampshire suggests that it is broadly the same as that of wider Hampshire. Around 19% of the population is between the ages of 0-16; 60% is aged 17-65; 15% is aged 66-80; and 5% is aged 81 or above. Women make up a slight majority (almost 51%) of the population, accounted for by a preponderance of women in the older age groups.

19 All statistics in this section from ONS, with exception of OCSI data

Page 60

Age Structure of Mid Hampshire (estimated)

100+ % Females 90 ‒ 94 % Males 80 ‒ 84

70 ‒ 74

60 ‒ 64

50 ‒ 54

40 ‒ 44

30 ‒ 34

20 ‒ 24

10 ‒ 14

0 ‒ 4 -4% -3% -2% -1% 0% 1% 2% 3% 4%

Ethnicity in Mid Hampshire is also similar to that of wider Hampshire, with approximately 93% of the population being White British, 3% being Eastern European, and 4% being Asian or ‘mixed’.

On self-reported measures, health appears to be slightly better in Mid Hampshire, with 85% of Mid Hampshire residents reporting that their day-to-day activities are not limited by their health versus 84% of wider Hampshire residents. Similarly 52% of Mid Hampshire residents report their health as “Very good” versus 49% of wider Hampshire residents. 90% of residents in both Hampshire and Mid Hampshire say that they “provide no unpaid care”.

Household composition in Mid Hampshire is broadly the same as that in wider Hampshire, with 13% of households being people aged 65+ living alone.

Although from a deprivation point of view, rural areas in Mid Hampshire do not score highly on most domains used in the Indices of Multiple Deprivation, a number of them do fall into the 0 – 10 % range for Barriers to Housing and Services domain. In the Winchester district these include Itchen Valley, Cheriton, Bishops Sutton, Wonston and Micheldever; in Test Valley this includes Over Wallop and Kings Somborne; and in East Hampshire, Ropley and Tisted20.

20 OCSI. Rural Evidence 2013

Page 61

Appendix 4: Interventions

These interventions are presented as they were reported during the conversations and we have grouped them under six headings. We have made no comment on the quality of the provision because it is not within the scope of this work to evaluate effectiveness.

Befriending initiatives Many respondents felt that befriending initiatives and the opportunity for face –to- face conversation were extremely successful in terms of supporting socially isolated people. These allow information to be given and signposting to take place, as well as ‘a cup of tea and a chat’.

However, to be effective they can be resource and labour intensive, particularly if operating in a rural location. Local churches and good neighbour schemes based in the community also support people and keep an eye on those who might be at risk of social isolation. (We know that there are five befriending schemes in Portsmouth City, but currently four of them are at capacity and not accepting new referrals).

Befriending is considered to be an especially effective intervention for young carers, those experiencing domestic abuse and the “oldest” old. It can also be of great value as a short term measure to help someone get through a crisis point such as hospital discharge, bereavement or acquired disability.

Providing opportunities for appropriate social interaction A recurrent viewpoint from the interviews was that men who were either retired or found themselves unemployed experienced isolation that came from losing their workplace network along with their identity and role. This is one reason why Men in Sheds is proving so popular. They provide a meaningful purpose to life and give men who are “experts by experience” the opportunity to pass on their skills and knowledge within the camaraderie and banter of a working environment. Men who might not like to be thought of as ‘seeking company’ can turn up and use the shed and tools to get on with a practical project. Another initiative that appeared to be well received was Hampshire Fire and Rescue’s “Carer’s Keep Fit”. This seems to appeal particularly to older male carers. We were told about one elderly carer who uses his two hours a week of HCC respite funding to go to the local fire station and get some exercise. He feels comfortable and relaxed in the masculine environment of the fire station.

A group of older Nepali women come together for crafts and informal English learning once a week, as they all feel that language is a major barrier to social interaction and independence. However, they have decided that they are not so keen on the crafts (they do craft at home already), and would like a clear focus on learning practical English such as asking for a weekly bus pass.

The most well attended lunch clubs tend to be those that have fun activities, as well as good food. One lunch club in West End has a remarkable range of

Page 62 activities on a pre-arranged programme such as craft, exercise, a talk, bingo. They also have a full day event four times a year, a few outings each year, and themed parties such as ‘A visit to Ascot’ or ‘Tea at the Ritz’. “We celebrate everything”. They even have a float in the local carnival. Last year the volunteers dressed as Snow White, and the attendees sat in the minibus wearing fake beards.

Providing practical skills to cope with the situation These included: wellbeing and coping courses for homeless people as a first step towards employment; therapy dogs and confidence building courses (through Dare to Live equine therapy) for veterans experiencing mental health issues, the consequence of witnessing traumatic events; and teaching deafened and hard of hearing people how to use their hearing aids effectively.

Working with individuals Not everyone wants the same intervention and it is important to investigate the types of things they want to do, when and where they want to do it. Similarly a particular condition does not have the same impact on everyone. For example, to develop an intervention plan for someone with autism you need to understand if the issue is a personal space one, a sensory connection, or about communication.

When appropriate, supporting people to be more active and to become volunteers (instead of being recipients) gets them more involved and gives them a sense of purpose. This is an intervention that groups working with older people employ. The alternative is a support group where participants are brought to a hall, sat down, given a cup of tea, then taken home again – all very passive. One participant said that in her experience people who are socially isolated are willing to help others who are in need.

Outreach support Outreach and support workers who can visit in the home or arrange to meet in a café or similar venue (for example if domestic abuse issue) is an intervention that is offered by a small number of organisations. The Safe Haven café in Aldershot is a great example of this approach in action.

Cheap and innovative solutions Cheap and innovative solutions that are being introduced elsewhere, for example:  the Dutch example where students are offered rent free units within a residential setting in return for acting as good neighbours to the elderly residents.  the Good Gym (https://www.goodgym.org), where runners drop in on an isolated older person as part of their run – the older people are called coaches because they help motivate the runners to run and they share their wisdom with them.  Casserole Club (https://www.casseroleclub.com), where volunteers share extra portions of home-cooked food with people in their area who aren’t always able to cook for themselves. They share once a week, once a month, or whenever works best for them.

Page 63

About Action Hampshire

“Whether it’s a large charity, or a tiny lunch club, we help and inspire organisations and communities to be the best they can be”

For almost 70 years, Action Hampshire has been supporting not-for-profit organisations to deliver great services to local people and communities; speak up for the changes they would like to see; and shape the future of where they live and work.

We use the term not-for-profit to mean any non-governmental organisation that is primarily motivated by a desire to make life better. This includes formal and informal groups, charities and social enterprises, as well as communities themselves.

Action Hampshire holds ISO9001, all relevant insurances and has achieved Level 2 of the NHS/DoH Information Governance. We are a Registered Charity and a Company Ltd by Guarantee.

Any profits earned from commissioned work are reinvested into supporting not-for-profit organisations and communities in Hampshire and Portsmouth.

Research conducted between September 2016 and January 2017 Report produced in February 2017

For further information, please contact: Kirsty Rowlinson, Head of Services Action Hampshire Westgate Chambers Staple Gardens Winchester, SO23 8SR

Tel: 01962 857355 Email: [email protected] www.actionhampshire.org

Registered charity: 0153806 Company Ltd by Guarantee: 3162873

Page 64