Real life stories from our research into innovative models of health, care and support for adults
What would a transformed system of health, care and support be like for people who use services and carers?
The map depicts a place in the future where promising innovative models have been scaled up across all five total transformation areas. It also indicates where individuals or groups of people receive excellent, joined up, health, care and support, which link to stories describing the experiences of these people.
Helping people and families to stay well, connected to others and resilient when facing health or care needs
A. Mike’s story
Mike, 73, spent most of his working life in the petroleum industry, surrounded by petrol fumes. He has chronic obstructive pulmonary disease (COPD), the most common lung condition among older people, and also has high blood pressure. Mike used to feel as if he was the only one suffering from COPD, but everything changed about five years ago, when his GP mentioned a local Breathe Easy peer support group for people living with lung conditions. Mike was initially hesitant about joining the group but he took a flyer home that day and decided that he would give it a go. He was really surprised at how much he liked being in a group environment – it made him feel that he wasn’t ‘on his own’. He also found the information and support from the health professionals helpful. In a matter of months, Mike’s symptoms improved dramatically – particularly as he really enjoyed joining the weekly walking group and choir. Fast forward to today, and he is now the lead volunteer for the local Breathe Easy group. He really enjoys encouraging new people to join and takes it upon himself to search for new ‘recruits’ when he’s out and about in the neighbourhood.
Supporting people and families who need help to carry on living well at home
B. Holborn House
Holborn House is a complex of 68 flats, with a mix of older and younger residents, which attracts a lot of students because of the nearby college. On the first Thursday of every month, the housing association puts on a social event at which everyone can gather, meet and chat over tea. Every other month, the association opens the gathering to others in the neighbourhood and hosts a cultural event so that people feel connected to each other, within and beyond the walls of the complex. As the residents have got to know each other, they have started to help each other more and more.
Each week Anne, 68, helps her neighbour, Clare. At 47, Clare is a full-time carer for her disabled son and needs help with her shopping. Andrew has lived in the complex for nearly 45 years, and has recently retired at 69. He regularly helps Anne and Clare with their DIY. John – Andrew’s older brother – lives in the same building and
has recently lost his wife to cancer. After his wife died, John wanted to stay at home but knew he would need some extra support. With some nudging from Andrew, a daily visit was arranged from a ‘supercarer’, who helps John with his personal care.
Rina – another neighbour – at 60, has diabetes. A health and wellbeing coordinator who works for the complex visits Rina every week, and has helped her set up Connected Care – an online portal that enables her to access all her health and care information in one place. This helps Rina keep on top of her appointments and has made it easier for her to manage her care needs.
Sergei, 62, has been the local postal worker for many years and recently trained as a ‘call and check’ support worker. He regularly pops in to see local residents, including Anne, Clare, Andrew, John and Rina, to discuss their health and wellbeing. He then flags any concerns to the health and wellbeing coordinator.
Enabling people with support needs to do enjoyable and meaningful things during the day, or look for work
C. Agne’s Story
Agne, 43, is living with a mental health condition and had a head injury five years ago. She had to stop working as a result of her injury and this led to her becoming increasingly depressed and more socially isolated. After being referred to MySupportBroker by the local authority, Agne met her peer broker, Sohan. Sohan is a peer with direct lived experience of living with a mental health condition. He was trained to be a peer broker by MySupportBroker two years ago after benefiting greatly from the service himself. Sohan helped Agne source, plan, negotiate, budget and manage her support and care needs within the overall context of improving her wellbeing. He helped her maintain the social connections she wanted and to stay living at home. He also worked with Agne to use her personal budget to pay for a personal tennis coach, reviving her childhood love for tennis. Agne’s tennis coach accompanies her to the tennis courts every week and helps her maintain her fitness. Agne is feeling a lot more positive and is even considering being trained as a peer broker herself, so that she can help others in the future.
D. Janine’s Story
Janine, 46, is a mum of three boys, the eldest of whom, Freddie, is 22 and has a learning disability. He attends a day centre during the week and needs a lot of support at home. Janine’s marriage broke down a few years ago and since then she has had to give up her job to look after her family full time. Although the day centre is close by, Freddie seemed disengaged when he was there. Janine was feeling increasingly isolated and depressed. A member of staff at the day centre suggests that Janine meet Amir, a local ‘circle connector’. Amir supports a number of local Community Circles which bring family, friends and community members together to support individuals. Amir works with Janine to build a circle of support around her, and also helps her connect with a service which could provide her with advice about her entitlements and how to access a personal budget. This would give her greater control over what services were purchased for her son. Worried about her weight gain and shortness of breath, Janine is also referred to a health coach who has worked with her to lose weight and cook healthier food for her and her family.
She has also stopped taking Freddie to the day centre and has used his personal budget to pay for gym membership and swimming classes for Freddie, which he really enjoys. These positive activities and extra money have greatly improved Janine’s mental health and made the whole family much happier and under less pressure.
Developing new models of care for adults and older people who need support and a home in their community
E. Shared Lives
Ling and Harry are 52 and 55 respectively. When their children left home, they decided to become Shared Lives carers. Doris, who lives nearby, is a single mother who was working as a waitress at the local diner. She has a teenage son, Russell, who has a learning disability. Doris worked about 45 hours a week, and cared for her son when she was not at the diner. She also visited her mum – who is living with dementia – once a month in a neighbouring village. She wanted to see her mum more often but it’s quite a long drive and Doris often felt too stretched and too tired to make the journey safely. It made her feels anxious that she couldn’t see her mum very often and this made her less patient with Russell, and with colleagues at the diner. Doris found out about the local Shared Lives scheme after a having a breakdown at work. She told a colleague that she wouldn’t be able to manage it all without support because she was exhausted. Her colleague told her about Shared Lives and said that she used a wonderful Shared Lives carer to help her care for her husband, who was also living with dementia. After finding out more, and signing up for the scheme, Doris and Russell were matched with Ling and Harry and they all met shortly thereafter. After a successful first meeting, Russell started staying with Ling and Harry every other week for a short break (consisting of two nights). With this caring respite for Russell, Doris was able to visit her mother more often and even began to think about evening college classes – something she had wanted to do for years. Russell and Doris have become like family to Ling and Harry.
Equipping people to regain independence following hospital or other forms of health care
F. Aisha’s story
When Aisha, 81, fractured her hip, she was relieved that her home care coordinator, Betty, had encouraged her to prepare a Red Bag with her personal possessions. The Red Bag keeps important information about Aisha’s health in one place, easily accessible to ambulance and hospital staff. This meant that when Aisha was picked up by the ambulance, the staff knew immediately that she had a severe allergy to a common painkiller.
Whilst in the hospital, Aisha had a daily visit from Sheila, a ‘movement buddy’ volunteer on the hospital ward. With guidance from the hospital physiotherapist, Sheila took time to help Aisha with some simple chair-based exercises after lunch every day. Along with the rehabilitation work with the physio in the morning, Aisha felt that the chair exercises really helped her regain her mobility quickly. This meant that Aisha was able to leave the hospital within five days. However, it was clear that she was apprehensive about going home. Lynda, the social care discharge worker in the hospital, recognised this and took the time to understand her concerns. It turned out that Aisha was worried that, without being fully recovered, she was not going to be able to attend her regular knitting classes at the local community centre, and she was fearful of feeling isolated. Lynda quickly suggested the British Red Cross local First Call – support at home scheme. First Call is a 12- week service where a friendly volunteer regularly visits people in their homes, and provides them with support.
Aisha really appreciated the British Red Cross volunteers, not only did they give her assurance and walked with her to her knitting class, but they were also very friendly and accommodating. For example, if it was too wet to go out, they would stay at home with Aisha and have a cup of tea and a chat.
G. Andrew’s story
Andrew is 66 and recently retired. Since his wife died two years ago, he has lost contact with his friends and has started to drink excessively.
Andrew was seeing his GP about his back pain, who used a social prescription to refer him to John, a local area coordinator. The GP also referred Andrew to a volunteer-led older men’s peer support network to help him reduce his alcohol use.
John built a relationship with Andrew, getting to know him and learning about his vision of a good life and how that might connect with others. This led to him being introduced to Scott, a disabled person who shares Andrew’s passions for the local football team and who wants someone to go with to the matches. Andrew started going out more and helping local people he was meeting through his new networks with DIY. He also started drinking less.
On a cold winter’s day, Andrew slipped on some ice and broke his hip. He had a successful operation but was worried that he would struggle to get going again. His friends through his new networks visited him though and offered to help out where they could.
Well in advance of being discharged from hospital, Andrew met a social care discharge coordinator to discuss his mobility, social and care needs, on returning home. This provided him with reassurance that he would be able to get around his flat safely. He also met up with John to revisit his goals and how he was working with others to find support, which included getting a little bit of help each day from a small micro enterprise proving home care, supported by Community Catalysts. Scott was also in touch and met him on the day he got home.
During the six weeks after Andrew left hospital, Scott visited Andrew once a week. Andrew was having problems getting fresh food as he couldn’t walk to the shops so John showed him how to shop for groceries online. A few weeks later Andrew admitted to not having any visitors as he was embarrassed about having a messy flat, so Scott helped out with some cleaning and tidying to encourage him to invite round his friends.
After six weeks Andrew felt much recovered but he still hadn’t been able to do much walking and was worried about becoming isolated from his friends at the local football club. Encouraged by John, he also registered for a buddy walking group, who met him at his front door twice a week and then walked him to the local community café for tea and biscuits which really helped him build up his strength and was a chance to meet new people or re-connect with friends.