Shaping the Future of Health and Wellbeing Services Across the NECA Area

Appendix 2 Shaping the Future of Health and Wellbeing Services across the NECA area 30th June 2016: Notes from Group 5 facilitated table discussion

This table discussion focused upon capturing the issues for voluntary, community and social enterprise (VCSE) organisations are “led by and for” equality or identity groups1 (such as women's, Black and minority ethnic, disability, faith, young people or older people’s VCS organisations). Participants:

1. Marion Scott, Women’s Health Equality Consortium

2. Shamshad Iqbal – Angelou Centre

3. Garry Haynes - Gateshead Council

4. Glenn Howe, Better Days

5. Razia Latif – Diverse Women’s Network

6. Andrea Perrett – Rape Crisis Tyneside and Northumberland

7. Roohia Syed Ahmed – Diverse Women’s Network

8. Colin Wilson – Sunderland

9. Penny Remfry – North Tyneside Women’s Network, North East Women’s Network

10. Facilitated by Sue Robson from the Women’s Commissioning Support Unit in conjunction with North East Women’s Network. 2 1. Debrief from presentations:  Shock - gall to call co-production when plan in place  Tilted towards large charities to help public sector  Thought this was about “radical” change  Are big charities “excluded” to protect interest  Not clear how our voice can have an effect on this  Financial side skipped over - how is it going to manage? not answered.  Hospitals ——>>>> prevention. Not told what the possibilities might be.

 Health Based NHS + LAs have demonstrated for 30 years can’t work together  Massive cultural issues  Medical model, clinicians - health demanding that we speak their language  System a juggernaut, caught up - communication with voluntary sector, hard to bring together  Devolution - not a magic bullet

1  Something wrong - same people coming through H and SC hierarchy  WRONG PEOPLE doing planning  South Durham - want to reach people are very marginalised  Accessibility!!!  Small groups have gone because large charities bid for contracts that took money away  Always not enough evidence - Burden put on small agencies. E.g. no need for special service for 3000 people, no consultation, no support, don’t exist.  Time - capacity to consult; why not spend an hour at our organisation  G/head - preventative service budget review - fear on ground that moving to big contract model - try to move back to grants. Suggest to look at social value. Less onerous monitoring for small grants and Trust. Bring back grants!  Talk to VCS go back to legal. Voice not listened to.  Rurality. [direct payments] difficult to get support.  Dictatorship  Consulted out - small specialism - health -criminal justice – violence against women and girls (VAWG)  Partnering - we are expect to do this but 17 different monitoring systems - to hear we are not providing the right evidence - galling 2. Common barriers identified from three case studies (see below)

These are some of the common barriers in the three case studies.

a) Fear and lack of trust of health and social care systems

 In case study 1 - Sarah fears what would happen to her if she tells the authorities.

 In case study 2 - Mounia fears prejudice and raciest attitudes, in white working class communities and from professional agencies, for example racism at the day service

 In case study 3 - Syrian refugees families, arrive in County Durham, they will have many fears of the unknown?

b) Poorer health as result of abuse and trauma

2  In case study 1 - Sarah, her sister and mother were beaten by her alcoholic farther. She is left with physical, emotional and mental scars, which she will carry for the rest of her life!

 In case study 2 - Mounia ha anxiety and other mental health issues as a result of her abuse.

 In case study 3 - Syrian refugee families have been forced to flee their homes and country to escape the violence and the civil war. They have been living long term in a refugee camp in Lebanon in crowded conditions, mental health has deteriorated further.

c) Poverty and Social isolation

 In all three cases are the people involved come from poorer back grounds and have many disadvantages, leading to social isolation.

How can we improve health and wellbeing out comes by working in partnership? Here are some of the solutions to these barriers: Under the Health Act Local Authorities now have the main responsibility for coordinating and for meeting the needs of the population. They are now the gateway to information on health and wellbeing s services in the local area.

a) Easier and different methods, for individuals to access information about who can provide them specialist services, support and knowledge. The Independent and impartial advice, necessary to help them to make their own choices including advocacy. This is even more important for vulnerable groups.

b) All Local authorities must now offer Advocacy, when doing a health and social care assessment to anyone who does not family or friend to support them. Have it is essential that local authorities explain clearly, what is meant by advocacy and how it can be helpful. This option should be available any vulnerable person they may come into contact with, even if they have family and friends.

 General advocacy is less effective in these vulnerable identity groups, specialist support and services are needed.

 The voluntary sector is already heavily involved in providing services in particular user led groups.

 These organisations were created to support, campaign and change the system. There was a lack of awareness, understanding, and inappropriate or no provision.

3  Examples include Disability North it is a user led charity, it supports disabled people and their families in the North East.

 The Angelou Centre is user led based in Newcastle, supporting black and ethnic minority women and their families including refugees.

 There seem to be a lack of support for young people

 The voluntary sector must listen to young people and help them create their own services.

3a) How does the system need to change to enable the “led by and for” VCS organisations to play its part in addressing the barriers for these groups/ individuals?

i. Stop infighting and work better together, to improve health and social care pathways and to support small VCSE organisations that are “led by and for” equality or identity groups, i.e. not sucking up all the available funding/ contracts without first thinking how these groups can be sustained and supported.

3b) How can the VCSE change to deliver the NECA/ NHS ambitions for a shift in focus to improving health and wellbeing in relation equality and identity groups?

i. More meaningful consultations, particularly with smaller VSCE organization – take time to make short visits (even if only for 30 minutes) rather than always expecting us to come to you. ii. Don’t keep talking about changing the system every six months or so and asking us about it – make the changes we ask for iii. Take on board the VCSE works in a holistic/ bottom up way and with communities of interest and identity – we complement the public sector. It is really important that people have agencies to advocate on their behalf who are independent of the state iv. The state and the system should stop making victims – there needs to be better assessment processes – joint assessments involving sharing, co-operation and humility v. Funding is needed to sustain core services, along with funding for innovation which has a risk factor built in – accepting that some innovation fails - With some issues we already know a fair amount about prevalence. E.g. DV, SV, and the relationships of these to mental health issues. These services in the VCSE should be grant funded. There should be a more standard range of services to grant fund from the expert, experienced VCSE service providers. (This standard list can be the subject of debate and education)

4 Appendix: Three case studies demonstrating complex needs and marginalization Case study 1 - A young woman with complex needs

From the age of about 5, [Sarah] was beaten by her father, as were her sister and mother. Her father was an alcoholic and very controlling. [Sarah] grew up learning to live in fear and all that means. Compared to the mental torture [Sarah] endured, she says the beatings were sometimes a relief, although she is left with physical scars that are difficult for her to look at.

In the past, [Sarah] has been hospitalised twice, but she lied to nurses and social workers about how her injuries happened. By the time she was 15, [Sarah] had no care about herself or her safety. She lived a risky lifestyle of alcohol and drugs and staying out until late. , [Sarah] entered an abusive relationship with a boy her own age, who first seemed to be empathic and understanding, but then raped her. From the age of 15 until she was 18, [Sarah] describes herself as being “off the rails”.

[Sarah], now 18 years old and reaching out for help and support, but cannot see any light in herself or her future- she says she feels broken.

Barriers identified:  Fear of services and what would happen to her if she told, lack of understanding of support that could have been available

 Lack of early intervention by services

 Lack of knowledge of safeguarding

 Lack of support services for young people

 Failure of services to identify signs of abuse or creating a environment of privacy to enable disclosure

 Lack of positive relationships

 No value for soft skills early intervention work, i.e. Confidence building, self-esteem raising

 Targets always being based on educational outcomes

 Society and culture of turning a blind eye

 Poor parenting

 Non-nurturing environments

 Poverty

 Lack of Self belief

 13 years of no-one noticing this young woman

 No trust in services

 Historic abuse

 Lack of multiagency work

5  No information sharing between professionals, i.e. Health, schools, etc.

Case study 2: A disabled BME woman with complex health issues

[Mounia] lives suffers from Lupus, Osteoporosis, Anxiety and mental illness and is a wheelchair user. [Mounia] lives independently in social housing and is supported with day and night care. She volunteers with her social housing landlord and has been instrumental with others in forming a County Durham-wide support network led by Black and minority women. Throughout her life [Mounia]’s has struggled with issues of belonging and identity and against issues of widespread systematic discrimination and injustice.

[Mounia] was born in Bangladesh in the 1970s. The family moved to England when she was a two and a half years old. Mounia and her twin sister were born prematurely, that's why they brought to England, moving to Bromsgrove, Kidderminster (near Birmingham), to be close to maternal grandparents. [Mounia] ’s mother had been forced into marriage and was extremely isolated upon coming to live in the North East. Her husband, [Mounia]’s father, was extremely controlling, believing his wife and children to be his property. Both [Mounia] and her twin sister were born with Cerebral Palsy. [Mounia] was made a ward of court and brought up in foster care in County Durham from the age of seven, although still attended a special needs school in a neighbouring authority along with her sister.

[Mounia] now has complex physical and mental health issues and is at risk of developing long term conditions such as heart disease, stroke and diabetes. Exercise, fitness and keeping her weight under control and really important for maintaining her health and [Mounia] is highly motivated to engage in these activities. However, the impact of austerity measures upon local services has resulted in some of the community based provision [Mounia] accessed to help prevent her health deteriorating have been taken away. For, example, she used to access a local community gym once a week, this was recommended by her GP and funded by the local authority. This service has been cut. In addition to the physical impacts of the closure of this community facility, [Mounia] has also suffered decreased independence and increased isolation.

Barriers:

 Prejudices and racist attitudes, in white working class communities and from professional agencies, for example racism in day care services

 Lip-services paid to community consultation when the decisions have already been taken

 Centralised and impersonal NHS and public service administration systems

 Lack of continuity of professionals and practitioners in the health and social care system

 Lack of community based services – you have to go to hospital even to get weighed if 6 you are disabled!

 Services exist for those who have already developed long term conditions but not for those who are at risk of them, such as obesity and type 2 Diabetes

 Services that do exist require GP referral – more services should be self-referral and community based

 The opportunity cost and social cost of NHS treatments should be more widely published and known

 Lack of transparency in complaint systems – the system covers its own back

7 Case study 3 - Syrian Refugee families in County Durham

Durham County Council has offered to house 200 Syrians over the next five years as part of the UK's response to the refugee crisis. Durham County Council are leading on, “The Durham Humanitarian Support Partnership,” that is tasked with identifying and formulating responses to the needs of new Syrian families seeking refuge: including housing, food, health, education, translation services and community support. It intends to work with churches, the voluntary sector and other partners as well as neighbouring authorities to identify what help may be required and how it should be provided.

Five families have already arrived and have been housed just outside of Durham City Centre, among this small group are babies and young children and disabled woman who a wheelchair user. Before coming to the UK the Syrian families have been living long term in a refugee camp in Lebanon, where housing is over-crowded, education is lacking and there is widespread poverty and poor nutrition. The physical and mental health of the Syrian families is shown to have suffered under these conditions.3

Barriers identified:  Entrenched language difficulties due to Syrian dialect, colloquialism and poor literacy

 As a result of above poor access to be-friending services such as there are in places like Newcastle and Middlesbrough

 Lack of understanding of child safeguarding systems in the UK

 Lack of understanding of local customs

 No knowledge of local services

 High expectations of among Syrians of what the British state can deliver, contrasting with an already struggling health and social care system (this could impact upon how Syrian access and engage with health services and place more strain on acute services)

 Front line health and social care workers lacking understanding of how to respond to needs of Syrian people

 Institutional prejudice within public services

Notes:

8 1 “Led by and for” means an organisation is led by those it exists for, whether that be for the purposes of advocacy, self-help, mutual support, campaigning or providing specialist services etc. Led by means that people from those particular equality or identity groups make up the whole (or majority) of the management committee, board of trustees and are in a majority among senior staff and workers. 2The Women’s Commissioning Support Unit (WCSU) is a three year project, funded by Esmée Fairbairn Foundation and hosted by Women’s Resource Centre. WRC provides infrastructure support, information and capacity building to voluntary and community organisations working to improve the status of women and is the leading national umbrella organisation for the women’s VCS, working towards linking all aspects of the women’s movement. http://www.wrc.org.uk/ NEWomen’s Network (NEWN) has been established for 10 years for the purpose of strengthening the North East women’s VCS and ensure its survival by encouraging and supporting collaboration and partnerships. http://www.newwomens.net/ 3 Conditions of Syrian refugees in Lebanon worsen considerably, UN reports, Un News Centre (15th December, 2015), http://www.un.org/apps/news/story.asp? NewsID=52893#.V2qztvkrKUk