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There when it matters How we made an impact 2019–20 There when it matters | How we made an impact 2019-20 Cover image: Simon Ellis at Neurological Care Centre The Chantry in receiving support from Physiotherapy Assistant Liliana Dragu

This page: Sheeba Panattu – Senior Nurse, Sue Ryder Neurological Care Centre The Chantry

Contents

There when it matters – thanks to your support...... 4

Our vision, mission and values – what we believe...... 7

Putting our work in context – what we do...... 8

Our service map – where we work...... 9

Our five-year strategy...... 10

Our year in numbers...... 11

There when it matters – for people with life-limiting conditions ...... 12

Sam’s story ...... 14

There when it matters – for people with complex neurological conditions . . . 16

Linda’s story...... 18

There when it matters – for people coping with bereavement...... 20

Heather’s story...... 22

Using our voice to help the people we support be heard ...... 24

Our volunteers are there when it matters...... 25

Meg’s story...... 26

Our Better Death campaign...... 28

Financial Summary 2019-20...... 30

Thank you for your support...... 31

2 3 There when it matters | How we made an impact 2019-20 There when it matters – thanks to your support

There when it matters – thanks to your support

We are committed to helping people with life-changing conditions and their families live the best life they possibly can .

In this report, you will see how the expert support Sue Ryder provides is making a crucial difference to individuals and families facing terminal illness and complex neurological conditions, as well as those who have experienced the loss of a loved one .

Like many organisations, we were seriously affected by the coronavirus (Covid-19) outbreak towards the end of 2019-20. Our healthcare teams faced significant additional pressure and we struggled to access the right Personal Protective Equipment (PPE) to safely provide our care. Our shops had to close and many of our fundraising events were cancelled, so we lost a substantial amount of income too . It was a very worrying time .

However, with the support of our staff, volunteers and supporters, we innovated, we campaigned and we made our voice heard, securing the future of our care for the people who need us . The way colleagues from across the organisation rose to this unprecedented challenge was remarkable and I am very proud of the whole Sue Ryder team .

Throughout 2019 and into 2020, we pushed ahead with our ambitious five-year strategy, More Care For More People. Launched in 2018, it aims to expand our care to a wider range of people, in more locations and in different ways.

As part of that strategy, last year, we provided a staggering 2 .2 million hours of palliative, neurological and bereavement support, while our Online Community supported over 110,000 people .

We want everyone who is living with a terminal illness, a neurological condition, or dealing with bereavement, to get the highest quality care and support, no matter where they live or who provides their care . That’s why we’ve also continued our work influencing policy-makers and working in coalition with others.

Although the repercussions of Covid-19 will be felt well into 2020–21, I am excited about the opportunities that the future holds for us in making an even greater impact this year . If you have supported us in any way, or would like to do so, please accept my heartfelt thanks for helping us to be there when it matters . With the support of our staff, Art therapy at Sue Ryder Neurological Care Centre The Chantry Best wishes, volunteers and supporters, Patient: Jane Binney we innovated, we campaigned Margaret Burgess – Day Services Leader and we made our voice heard, Heidi Travis securing the future of our care Chief Executive for the people who need us . Heidi Travis, Chief Executive

4 5 There when it matters | How we made an impact 2019-20 Our vision, mission and values – what we believe

Our vision, mission and values – what we believe

At Sue Ryder, we are passionate about giving people the quality of care they deserve .

For us to achieve this, we have a clear vision for Sue Ryder, an ambitious mission, and operate with three corporate values .

Our vision Our mission We see a future where our palliative Sue Ryder supports people and neurological care reaches through the most difficult times of more communities; where we can their lives . Whether that’s a terminal help more people begin to cope illness, the loss of a loved one or with bereavement; and where a neurological condition – we’re everyone can access the quality there when it matters . Our doctors, of care they deserve . nurses and carers give people the compassion and expert care they need to help them live the best life they possibly can . Our values

1. Supportive . 2. Connected . 3. Impactful . We’re here for people when it When we work together, we can We find new and inspiring ways to matters, and that includes each achieve so much more for the positively impact the people we other . We encourage, inspire and people we support . We respect support – from small gestures to help one another, and celebrate that everyone at Sue Ryder plays big breakthroughs . This proactive success . a vital part in delivering quality attitude drives us forward to care . achieve our ambitions and transform lives .

Nurse: Danielle Gregory – Ward Manager at Sue Ryder Duchess of Kent Hospice 6 7

There when it matters | How we made an impact 2019-20 Our service map – where we work

Nurse: Susan Philips – Ward Manager at Our service map – where we work Sue Ryder Leckhampton Court Hospice with patient Mr . Suarez

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We take the time to understand what’s important to people and give Community services them choice and control over their care . This might be providing care 12 e der ns Homecare rroath 5 eteroroh for someone at the end of their life, in our hospices or at home . It could 1 e der tirin and be helping someone manage their grief when they’ve lost a loved one . air Homecare tirin 15 1 e der erth and inross edord 4 Hitchin 8 17 pswich Or providing specialist care, rehabilitation or support to someone with a Homecare erth 11 neurological condition . p nti anar 2020 hetenham 2 1 e der ementia oth ordshire Together, Suffolk 3 We want to provide more care for more people when it really matters . eadin 1 We see a future where our palliative and neurological care reaches more communities; where we can help more people begin to cope with bereavement; and where everyone can access the quality of care they deserve .

8 9 There when it matters | How we made an impact 2019-20 Our year in numbers

Sue Ryder Neurological Care Centre Our year in numbers Dee View Court, 713 people have pledged to leave a gift 6,682 people were cared for in their Will to in our hospices or by our £55m Sue Ryder hospice at home teams It costs us over £55m to run our services each year

81p in every £1 spent goes Our five-year strategy towards our patient care. 280 people were supported by Our key objective for 2018 to 2023 is to provide our neurological centres We have 1054 Sue Ryder ‘more care for more people’ . Nurses and Nursing Assistants This means more palliative and neurological services and bereavement support delivered in the community and online as well as through building greater partnerships with other healthcare providers . Our strategy sets out our 111,622 ambitions to make sure our buildings are fit for purpose and to expand these, people visited where possible, in the future . 27,792 people played the Online the Sue Ryder lottery Bereavement In 2019/20, the second year of our strategy, we have: 2,200 people volunteered 325,000 hours Community • Expanded our palliative community services – giving people more for our hospices or neurological centres choice over where they are cared for . Last year we provided over Developed new and innovative ways of delivering our services – • 2.2 million hours of care an area which we accelerated in response to the coronavirus pandemic .

• Increased and developed our Online Bereavement Support – including the launch of our Online Bereavement Counselling service. 12,800 people • Expanded two of our specialist neurological centres and opened volunteered in our shops the Sue Ryder Neurological Care Centre – a new purpose-built, state-of-the-art, specialist neurological centre in Preston. 99% of people cared for by our hospice 21,818 people took teams would recommend our care to • Continued to build relationships with MPs, lobby government and part in sporting friends and family A better events and death speak up for the people who need us . We have engaged with almost 50 How to plan the end of life you want MPs, including government ministers . challenges to raise money for Sue Ryder We are proud of our achievements so far . Although we anticipate the challenges brought by Covid 19 – both financial and for service provision – 90% of our Online to continue well into the next financial year, we are determined to continue Bereavement Community to provide outstanding care and to be there when it matters for the people users said the site helped 2,500 people who need our support . them to feel less alone downloaded our guide A Better Death

10 11 There when it matters | How we made an impact 2019-20 There when it matters – for people with life-limiting conditions

On 31 March 2020 we closed the inpatient unit at Sue Developing new and innovative methods of Ryder Nettlebed Hospice and are focussing on providing supporting service delivery There when it matters – specialist palliative care in people’s homes across South The need for online consultations quickly ramped up Oxfordshire . This decision was made as a result of the when coronavirus restricted the number of people who for people with life-limiting conditions high running costs, as well as the widespread decline in could visit our hospices and we responded by increasing demand for inpatient care,2 making the hospice financially our trial of online consultations and rolling it out to all of Palliative Care 2019-20 unviable . We will be moving the coordination and our hospices as well as our neurological centres . specialist advice line and day services provided by South As well as ensuring the safety of our patients during the Oxfordshire Palliative Care Hub to a new location in 2020. pandemic, online consultations also: We provide expert palliative and end-of-life care, tailored Community services in Sustainability and collaboration to each person . Every day we support people to have a The team has tripled in size and is increasing its reach • Provide a new method of patient consultation that One of the biggest challenges for palliative services is better life and better death, whether at home or in one of across the county . This is supported by our telephone meets the needs of patients and families sustainability and particularly the level of support provided our hospices . By growing our community services we are support line, which offers help and advice to patients by statutory funding which in some areas has not • Offer a service that enables people to choose when and providing people with choice and giving their loved ones seven days a week . increased for ten years . where they access medical support real comfort .  More and more people tell us they wish to remain at In order to ensure the sustainability of services, • Increase medical capacity to review patients In recent years, we’ve seen an increasing demand from home . We only get one chance to get this right, and collaboration with commissioners and other care people wanting to receive their palliative care at home • Allow medical staff to consult with patients out of hours as a charity we’re doing all we can to meet this need, providers is essential . Working with commissioning teams and in the community 1. That’s why, over the last year, where appropriate . working closely with the NHS Gloucestershire Clinical to help analyse needs for end-of-life care and refine we’ve focused on offering more choice on how and where Commissioning Group to ensure our developments models to support those needs is a key focus in all areas . We have now set up a task force to evaluate how video people receive their care . continue to meet the ongoing plans for end-of-life conferencing has been used during the pandemic . This Here are some key examples of ways we’ve done this over As part of this, we have increased the number of our provision across the county .  will help us to understand how we might adopt this way of the past year: community-based nurses so they can provide more working in the future; where it is most effective; and what Elise Hoadley, Director, Sue Ryder services in community settings and in people’s homes . We co-created the Oxfordshire Palliative Care training and support those using the service may need . Leckhampton Court Hospice This mirrors changes across the healthcare sector, and Network, which has led us to work with the local We also introduced tablets into our hospices to allow also supports the NHS plan to deliver more care in Community service in healthcare system to maximise the impact of palliative patients to keep in touch virtually with their families communities . This service has expanded over the past year, and we care across the area in a joined-up and sustainable way. throughout the pandemic . are now working with local commissioners to look at This group are looking at ways to raise the profile of Key examples of the ways we’ve grown our palliative continuing that development further for patients on end-of-life services and the impact they provide. Delivering outstanding quality of care community services in the last year include: specific condition pathways. During the year, three of our hospices – Sue Ryder St We joined the End-of-Life Transformation Project Palliative Care Hub South Oxfordshire John’s, Sue Ryder Thorpe Hall and Sue Ryder Duchess of Palliative Care Hub Board, whose role is to review the delivery and Throughout the year we have adapted our palliative Kent – were inspected by the Care Quality Commission The Hub, which delivers planned and crisis care, and is a commissioning of end-of-life care pathways across community services to expand beyond our pilot hub . and all improved their rating from Good to Outstanding . point of contact and source of support for all patients on and Cambridgeshire. As a result, we’ve grown our rapid response service and the end-of-life register, has recruited a senior nurse and crisis service, which has not only helped us support more We have built on our involvement in the palliative care  Staff treated patients and their families with now accepts all referrals for patients requiring an end-of- patients and their carers during a crisis, but has prevented networks across Yorkshire, supported by our Sue Ryder compassion and kindness, respected their life healthcare package . hospital admissions . The number of people supported Wheatfields and Manorlands teams. dignity and privacy, and went above and beyond through rapid response or crisis increased by 20% last In order to provide more care for more people, and to expectations to meet their individual needs and year . Through the growing work of our hospice at home support the changing needs of the community, we have wishes. Staff did all they could to support the team we have also been able to work with the NHS to increased our focus on caring for people at home whilst emotional needs of patients, families and carers to enable more people to receive packages of care and leave still offering inpatient unit provision which has a high minimise their distress. Staff helped patients live hospital when they wish to be cared for at home . Last impact, but is limited to small numbers, where needed . every day to the full .  year we increased the number of people supported with CQC Inspection Sue Ryder Thorpe Hall packages of care by 61% . December 2019

Nurse: Rebecca Clarke at Sue Ryder Leckhampton Court Hospice

1 A survey commissioned by Sue Ryder in July 2019 showed that 73% of people who knew they could choose where they wanted to die have chosen to die 2 The number of patients being cared for in the inpatient unit had decreased to an average of four people being cared for at any one time at home. 12 13 There when it matters | How we made an impact 2019-20 Sam’s story

Sam’s story

Sam Sykes’ husband, Ben, was diagnosed with incurable and inoperable bowel cancer in January 2019 . He spent the last five weeks of his life at Sue Ryder’s Leckhampton Court Hospice where he was able to spend precious time with Sam and their two-year-old daughter Erin. Ben died on July 16, 2019 at the age of just 36 .

Sam takes up the story: ‘Leckhampton Court is honestly the most magical and inspirational place and we were truly blessed to have been there . Ben just wanted to live and laugh . To make the most of every single day we had left together.

“This happened because of every element of Leckhampton Court. It happened because of the doctors who cared about Ben’s every comfort . It happened because of the nurses who took the time to really get to know us, and to understand our often-inappropriate sense of humour. It happened because of the care assistants who got to know how important it was for us to still enjoy our evening gin and tonics on our hospice date nights and who cheered us on in our newfound jigsaw obsessions . Because of the chefs who worked so hard to find meals Ben could actually try and eat.

“It was because of the cleaning staff who so patiently let our little girl try and help with the mopping of Daddy’s room . It was because of the volunteers who keep the grounds so peaceful and tranquil, because of the sewing group who made the most beautiful memory blanket for our daughter, because of the compassionate words from the staff in reception. It happened because of the newfound friendships that were forged out of shared experiences .

“And finally, because on July 16, the hardest day of my life, the staff were there when I needed them the most, to hold my hand and prepare me every step of the way .”

At the hospice, Ben could be a father, a husband, a son and a friend… He wasn’t just another patient . Sam Sykes, whose husband, Ben (pictured), died in Sue Ryder Leckhampton Court Hospice in 2019

14 15 There when it matters | How we made an impact 2019-20 There when it matters – for people with complex neurological conditions

Sue Ryder has delivered services from Cuerden Research and technology Hall, for about 30 years now . As we all know, this One of our strategic commitments is to prioritise research There when it matters – for people with building is an amazing building – Grade 2 listed – and technology in long-term neurological conditions. but completely inappropriate for the specialist care Initiatives like electronic care plans and virtual reality complex neurological conditions that we offer. So moving to the new centre will be therapy have contributed to our outstanding quality of truly life-changing, not only for the residents who will care and enable Senior Managers to provide up-to-date Specialist Neurological Care 2019-20 move with us, but we believe for a generation detailed reports on trends within our neurological services . to come .  Introduction of electronic care plans Terry Mears, Director Sue Ryder Neurological Electronic care plans provide a clear overview of client We support and care for people with life-changing Our primary aim at Dee View Court is to help Care Centre Lancashire care plans and risk assessments. They enable Clinical neurological conditions . From specialist residential care to people with complex neurological needs have the Managers to focus on areas of care planning to enhance rehabilitation, we help each person live the best life they best quality of life possible . The expansion means The Chantry neurorehabilitation services expansion in order to reach the highest possible outcomes for our possibly can . that we can give more people a chance to get the Our rehabilitation service at the Chantry provides clients . most out of life by giving them the care they need specialist care to people with acquired brain injuries, for Expanding our care and deserve .  example due to or traffic accident. With increasing Following a year-long trial using CareSys Electronic Care Our research3 has shown that it’s likely more than 15,000 demand for the service from across the region, we took planning System, we have decided to roll out the system people with neurological conditions have been placed Valerie Maxwell, Centre Director Sue Ryder the decision to convert existing rooms to provide another across the organisation . This involved having a very robust in older people’s nursing or care homes across England Neurological Care Centre Dee View Court. 3 neurorehabilitation beds from September 2019 . training programme for over 400 clinical staff members. that are not designed to provide the specialist support Sue Ryder Neurological Care Centre Lancashire By the end of March 2020, three of our four neurological they need. In many cases these homes are simply not We have been very successful in meeting our ambition opening care centres will have CareSys fully implemented, with the appropriate . Our research also paints a picture of high and have cared for 20 additional rehabilitation patients up Our specialist neurological centre in Preston had operated last centre in transition . levels of variation in service provision across the country . until the end of March 2020 of whom 95% need less care out of Sue Ryder Cuerden Hall for 30 years. It had served afterwards, 71% had improved mental health, 86% had Virtual Reality technology That’s why, over the past year we have focussed on us well but the Grade 2 listed building was no longer fit improved transfer ability and 48% had improved mobility . In 2018 we began trialling the use of virtual reality expanding our neurological care provision, so that we can for the delivery of specialist neurological care and the headsets at Sue Ryder Neurological Care Centre Dee provide more specialist care for people who really need it . development of a new purpose-built centre, Sue Ryder Delivering outstanding quality of care View Court for clients with conditions such as cerebral To achieve this, we led an 18-month investment project in Neurological Care Centre Lancashire, was completed in During the year, two of our neurological centres – Sue palsy, and motor neurone disease . The our buildings . March 2020 . Ryder Neurological Care Centre The Chantry and Sue technology allows users to immerse themselves in an Ryder Neurological Care Centre Stagenhoe – were Sue Ryder Neurological Care Centre Dee View Court The purpose-built centre in Preston has 40 accessible outside realm of reality . For example, they can experience inspected by the Care Quality Commission. As a result, The expansion en-suite rooms, including 14 rehabilitation beds, and four the sensation of skydiving or ‘feel’ the sea lapping at their Chantry improved its rating from Good to Outstanding Our neurological care centre in Aberdeen often had more supported living apartments . A wide range of facilities, toes on the beach . Therapists noted that clients using the and Stagenhoe retained its rating of Good . Sue Ryder than 30 people on the waiting list . To meet this growing including a rehabilitation kitchen and a hydrotherapy pool, technology appeared less agitated and more relaxed . Neurological Care Centre Dee View Court in was demand we extended the building, doubling the number will help support the delivery of expert neurological care, inspected by the Care Inspectorate and retained its rating Sue Ryder was awarded a grant to evaluate the of places available. We now have 44 fully accessible en- offering more opportunities for the people we care for, of Excellent . technology and examine clients’ agitation, mood and suite rooms – eight of which offer apartment-style living. now and in the future . pain levels. We found that after two weeks of exposure The staff were outstandingly responsive to the needs The first clients were welcomed into the new extension Clients who were moving to the new Neurological Care to VR therapy, with three 20-minute sessions per week, of people at the service, by providing a wide range at the end of 2019 and the feedback so far has been very Centre took part in a workshop run by ‘Paintings in participants reported significantly higher levels of of person-centred activities. Arrangements for social positive . The expansion was completed in December Hospitals’ to choose artwork for their new home, giving happiness and lower levels of pain . The results particularly activities were innovative, met people’s individual 2019 following a successful £3 .9 million capital them the opportunity to make a real contribution and emphasised the cumulative effect of regular exposure to needs so people could live as full a life as possible . fundraising appeal . show that their input is valued and appreciated . VR therapy compared to the effect of a single session. There were strong community links and people It’s great to have a say in how the new centre is accessed the community regularly .  The ongoing COVID-19 pandemic, which broke out during going to look and feel .  the final phase of the current research project, required us CQC report Sue Ryder Neurological Care to bring the project to an early finish, thus preventing the Bev Sharrock, Client Sue Ryder Neurological Centre The Chantry, May 2019 possibility of conducting focus groups with staff members Care Centre Lancashire. who worked with the participants .

3 Time to get it right: A report on the provision of health and social care services for people with neurological conditions in England. Published by Sue Ryder in 2019. https://www.sueryder.org/blog/time-to-get-it-right-people-neurological-conditions-england 16 17

There when it matters | How we made an impact 2019-20 Linda’s story

Sue Ryder…has enabled me to do things I thought I might never do again . It has given me my life back . Linda Barnard, who received intensive rehabilitation at Sue Ryder Neurological Care Centre The Chantry in 2019 Linda’s story

Mother-of-three, Linda Barnard, was taken seriously ill with Guillain-Barré Syndrome, a very rare – and potentially life-threatening – condition that affects the nerves. Linda was left unable to walk so when she was given a chance to go for intensive rehabilitation at The Chantry, Sue Ryder’s specialist Neurological Care Centre, she seized the opportunity .

Linda takes up the story: “I can’t remember anything about being in A&E . My breathing deteriorated and I went straight into intensive care and was put on a ventilator for about 10 days .

“I couldn’t close my eyes properly, I couldn’t move my legs or arms, I couldn’t speak . Because my lungs weren’t functioning properly I ended up with double pneumonia and back in intensive care. I was in hospital for two-and-a-half months . I desperately wanted to leave but I knew I needed more physiotherapy – so the news that I could go to rehab was amazing .

“I went to Sue Ryder’s The Chantry at the beginning of June 2019 for two months . I went in in a wheelchair . I couldn’t even stand . Being a single mum was quite an incentive . My goal was to get home for my children . I had a really clear idea of what I wanted to achieve and the Sue Ryder team’s attitude with me was great, which gave me that little extra push that I needed at times .”

With the support of Sue Ryder’s inter-disciplinary team, Linda returned home to her family walking with a stick and has since been able to return to work and driving .

“I have come on in leaps and bounds . The service I received from Sue Ryder is absolutely vital . Every day I am just overjoyed at still being here ”.

18 19 There when it matters | How we made an impact 2019-20 There when it matters – for people coping with bereavement

Increase in posts to our Online Community At the end of the pilot we had a better idea of what we needed to do to make the service as effective as There when it matters – possible. 3,000 For instance, a lot of users said they had issues accessing for people coping with bereavement the video platform, so we decided to create our own in- 2,000 browser video . We also worked hard to improve the user’s Online Bereavement Support 2019-20 experience of the site by providing more information at 1,000 key points, clearer navigation, and making it easier to

Average posts per month Average change or cancel appointments . We’ve already seen what a difference these We support people who’ve lost someone they love . innovations are making: Our Online Bereavement Community helped over Aug-Oct 2019 Dec 2019-Feb 2020 • The number of posts and the reply rate have both Our service users told us: 135,000 people last year open up about their grief, increased, suggesting that notifications are successfully “Having access to free counselling in the safety of connect to others and find a way through. 90% of online community users said the community prompting people to reply to each other . your own home has made a massive difference to made them feel less alone A quarter of bereaved people don’t feel they can talk me . At the time I reached out I was on the brink of a • New tools are allowing moderators to keep track of about their feelings . We know that the right support could We also provide online bereavement counselling nervous breakdown and now, three months later, I issues raised by users more easily . help them break the often painful silence around the Our Online Bereavement Counselling Service was first feel mentally stronger than I have in a long time .” death of a loved one • Emojis are widely used by members to add expression launched as a pilot, only available for Online Community “Your online service was easy to use and my to their posts . members, in May 2018, offering free, confidential and When a loved one dies, it’s only natural that bereaved counsellor was superb . From my point of view – and professional support via video chat . family and friends will experience grief . It’s a powerful and • Pictures are being used to show photos of lost loved- I am relatively computer savvy – you have got things painful emotion – and it can be a very lonely one too . For ones, pets and quotes about grief . During the pilot we completed over 260 assessments, with just right: it flows seamlessly.” those going though it, there’s nothing more helpful and more than 80% of those going on to book counselling • Videos are being used to share songs that are healing than talking to someone who understands how sessions . The pilot was also an excellent opportunity meaningful to people, or TED talks about grief they they are feeling . to test the technology that makes the service possible have found helpful . and find out what people are looking for in an online That’s exactly what Sue Ryder offers through its counselling service . online community. Our service users told us: In April 2019 we began the project to create a robust It is a place where bereaved people can exchange “I found this site so incredibly helpful when I’d got to online bereavement counselling platform that could messages, share experiences and support each other in the point, a few months after losing my husband, of support many more clients and counsellors . The platform their own homes, no matter where they live . feeling I couldn’t burden others with how badly I was launched in November 2019 when we also began coping . People here understand .” Our community was launched in 2015 and is now recruiting more bereavement counsellors . supporting over 10,000 people per month . The number of “When I first came to the forum over a year ago now, I users is steadily growing so we’ve taken steps to improve thought I would never laugh again and then I picked the site so it can support as many people as possible . up on some members that were having a joke with each other and I found myself laughing . The forum In 2019 we upgraded the site and added a number is not just for sadness but to teach us how to laugh of new features, which have made it much easier to again with the help of each other .” use – including: • Emojis, pictures, video and text formatting . “This forum has helped me get through my worst times and I have met some new friends who are • Notifications similar to Facebook, so users don’t have to always there when I need them .” rely on notifications being sent to their emails.

• A new FAQ and help section.

• Improved moderation tools to keep the site safe and secure .

20 21

There when it matters | How we made an impact 2019-20 Heather’s story

Heather’s story

Heather Balaam lost Allan, her husband of almost 40 years, to cancer in June 2019 . She was devastated . With no family and no friends nearby to confide in, she struggled with her emotions . She desperately needed someone to talk to . Then, in August, she found Sue I knew immediately that, on this Ryder’s website and started chatting with other users of our Online Community. forum, I could say the thoughts and talk about the feelings that I needed Heather takes up the story: to voice . I didn’t feel so alone . “It felt so good to be able to tell my sad story . And then I started receiving Heather Balaam, who became part of Sue Ryder’s online the most compassionate, understanding replies . I was overwhelmed by community after her husband, Allan, died in 2019 the gentle, non-judgmental replies that I, and others, were receiving. It was my much-needed lifeline and it has helped me in my healing process. The support and affirmation I have received on the Online Community gives me the strength to stay on the path of healing myself as well as believing that there can be a light at the end of the tunnel . As I progress down this path, I feel more positive than before .

“The Sue Ryder Online Community opened my eyes to how many people are going through this every day . Although each person’s circumstances are different, the pain and grief are similar. It is truly amazing how much the human spirit can endure . It has made me aware of how truly compassionate and supportive people can be . The kindness of strangers never ceases to overwhelm and humble me . Reading the posts of others helped me to remember the things in my life I should be thankful for .

“I am so glad I found the Sue Ryder site. I find the forums to be helpful for me. They make me realise that I am not alone, and often bring some solace. They are a place to talk with others that understand what I’m going through . They are available whenever I feel the need to talk, or just to read the posts . There is always help if needed .”

22 23 There when it matters | How we made an impact 2019-20 Our volunteers are there when it matters

Using our voice to help the people we support be heard

Influencing models of care is a key part of our work. Our influencing team works with and for the people we support, and other people affected, to ensure their voices are heard .

In 2019/20:

• We met with Scottish government minister Joe • In response to our Rewrite the Future campaign, Fitzpatrick to explore ways the Scottish government highlighting the inconsistent approach to care and can improve access to bereavement support – and support for people with neurological conditions in contributed to the development of the Bereavement Scotland, the Scottish Government committed to Charter for Scotland. publishing a national action plan to improve the situation . The end of 2019 saw the publication of • A social worker from our Duchess of Kent Hospice the Framework for Action on Neurological Care and represented us in a Department of Work and Support, which is a huge step forwards . We are now Pensions project to change the rules so that people working to ensure the framework is addressed so that Our volunteers are who are terminally ill can access fast-tracked benefits people with neurological conditions are no longer left more easily . feeling written off. there when it matters • We gave evidence to the Select Committee on • The general election called at the end of 2019 gave Work and Pensions in the House of Commons on The difference our volunteers make us an opportunity to engage with candidates from the Bereavement Support Payment . Sue Ryder all parties standing in the constituencies where our social workers also took part in a workshop with the services are located . We now have much stronger Volunteers play a huge and vital part in supporting and feels supported. With face-to-face bereavement Department of Work and Pensions, exploring ways of relationships with candidates who were successfully the delivery of our services . From cleaners to drivers’ counselling and support groups closing their doors improving bereavement benefits. elected to the House of Commons. These relationships assistants, kitchen staff, gardeners, receptionists, retail around the country as a result of coronavirus, the platform • As part of our #JustSaySomething bereavement have been put to good use as part of our bereavement volunteers, admin staff and online sales experts, their is becoming an ever-more important lifeline for those who campaign, over 20 MPs across all parties signed an Early campaign and particularly when we started feeling the contribution means we can provide expert palliative, are grieving and feeling isolated. The Online Community Day Motion by Carolyn Harris MP, calling for people to first effects of the coronavirus pandemic. neurological and bereavement support for more people . volunteers are trained and supported by staff to post talk to someone about their grief and for public figures supportive responses on the site . • Together with health charities and other professional 15,000 people volunteered for us last year carrying out 13 to facilitate open discussion to create as compassionate bodies, we campaigned for the ‘Right to Rehab’ . During different roles in retail and 23 with our healthcare teams. This is our first ever remote-only volunteer role, with a society as possible . the election campaign, we released a manifesto to In retail, our volunteers stay with us for an average of both training and volunteering carried out completely raise awareness of the value of rehabilitation and push 1 .2 years and in healthcare for 3 .5 years but our longest online . The platform continues to be monitored and all parties to pledge universal access to community serving volunteers have been with retail for 46 years and moderated by staff. rehabilitation services . This resulted in manifesto with healthcare for 43 years . Learning and development opportunities commitments from the Scottish Labour Party and Plaid This year 2,200 people volunteered for 325,000 hours, Being able to offer learning and development Cymru, as well as national media coverage. We then which is equivalent to a value of £2.67million – a massive opportunities is key to ensuring volunteers feel they are built on this with a Day of Action in Westminster in contribution for the organisation . valued . Last year over 1,300 courses were completed by February, with over 30 MPs and peers taking part . our active 680 volunteers who have been enrolled onto Online Community Volunteers our E-Learning system, across Retail and Healthcare. We This year we recruited a group of volunteers to a new have also recruited over 100 volunteers into paid Sue role supporting bereaved people on the Sue Ryder Ryder roles this year . Online Community. The volunteers help to welcome new members and ensure everyone receives a response

24 25 There when it matters | How we made an impact 2019-20 Meg’s story Volunteer Meg visits her friends, Frances and Viktorija, Senior Care Assistant at Sue Ryder Neurological Care Centre The Chantry Meg’s story

Retired counsellor Meg, 77, has been volunteering at Sue Ryder Neurological Care Centre The Chantry since 2018 . She visits weekly as a befriender to several of the residents, each of whom has been impacted by a neurological condition .

Meg, who worked for many years at the mental health charity MIND, had been retired for quite some time when she felt a need to get back out into the community .

“I was just on the bus one day, when I saw a sign to Sue Ryder, The Chantry – and it just struck me that with my experience in mental health counselling, perhaps I could help out in some way .”

Meg divides her weekly visits between three residents, John*, Gerald and Frances, each of whom receive different kinds of help and attention from her.

“Gerald can be up and down emotionally and he likes to let off steam occasionally so I’m a great sounding board! Frances, on the other hand, has resided here for many years, is easy-going and just likes to have a nostalgic chat over a cup of tea sometimes ”.

When Meg first met John, he found it difficult to engage with people emotionally .

“When I would ask John a question such as ‘Would you like me to read to you?’ he would give me a very short and monotone response: ‘If you like.’ Since then there has been a real breakthrough in John’s emotionally reserved world and I We have a small group of very feel privileged to have made a connection . John and I are friends now .” hard-working and generous Volunteers like Meg are invaluable to the centre. The dedicated Chantry team individuals who we regularly count works to full capacity at all times, and the extra help provided by volunteers is always much appreciated by residents, relatives and staff. on for their time and assistance . Between them, they have a range of valuable skills, which make a positive impact on the residents and staff here at The Chantry. Jo Marshall, Director of Sue Ryder Neurological Care Centre The Chantry, where Meg has volunteered since 2018

*Residents’ names have been changed to protect their privacy . 26 27 There when it matters | How we made an impact 2019-20 Our Better Death campaign

A better death How to plan the end of life you want

Our Better Death campaign

Following an initial pilot in Cambridgeshire in February 2019, we launched our Better Death Campaign in the North of England in August 2019 to get people thinking and talking about this much-avoided subject, and offer help in answering tough questions about dying .

The campaign included a vox pop video of members of the public reacting to questions about planning for their death and PR, outdoor, radio and digital advertising . It encouraged people to download our Better Death guide . Over 2,500 people downloaded the guide and over 62,000 people watched the video .

The campaign resulted in significant uplifts in awareness and understanding of Sue Ryder . In February 2020 we launched a national digital only version of the campaign, which was cut short by the coronavirus pandemic .

28 29 There when it matters | How we made an impact 2019-20 Thank you for your support

Financial summary 2019–20 Thank you for your support

Overview Thank you to everyone who supported Sue Ryder .

We can only be there for people when they need us most Sue Ryder reported a deficit income of £1m in the year point, the charity was on track to report a surplus as a compared to income of £2 .3m in 2018–19 . This result result of strong growth in fundraising and increases in thanks to the generosity and kindness of our supporters reflects the early impact of the coronavirus (Covid-19) statutory income for both end of life and neurological and volunteers . lockdown, which resulted in a shortfall in retail sales of care. Covid-19 has had a more significant impact on our £2 .3m in March compared to the year before . Up to that services and finances in 2020–21. To find out more about how to donate, fundraise, or volunteer for Sue Ryder visit www.sueryder.org .

End of life Charitable End of life 12.9m activities 25.8m 44.5m Abigail Plant at The Great North Run half marathon Statutory income 29.7m Neuro 14.0m

Scotland 2.8m Neuro 16.4 Fundraising 21.3m Income 54.3m Income Expenditure 55.3m Expenditure

Scotland 2.3m Fundraising 5.0m

Retail 1.1m Support Other 2.2m 5.8m Deficit 1m

Unaudited accounts for the year ended 31st March 2020

30 31 There when it matters Sue Ryder supports people through the most difficult time of their lives. For over 65 years, our doctors, nurses and carers have given people the compassion and expert care they need to help them live the best life they possibly can .

We take the time to understand what’s important to people and give them choice and control over their care . This might be providing care for someone at the end of their life, in our hospices or at home . Or helping someone manage their grief when they’ve lost a loved one . Or providing specialist care, rehabilitation or support to someone with a neurological condition .

We want to provide more care for more people when it really matters . We see a future where our palliative and neurological care reaches more communities; where we can help more people begin to cope with bereavement; and where everyone can access the quality of care they deserve .

For more information about Sue Ryder call: 0808 164 4572 email: [email protected] visit: www.sueryder.org

/SueRyderNational @sue_ryder Sue Ryder, 183 Eversholt Street, London, NW1 1BU

This document is available in alternative formats on request .

Sue Ryder is a charity registered in England and Wales (1052076) and in Scotland (SCO39578). Ref no. 07202 © Sue Ryder. May 2020. v

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