James’ story

With thanks to the Shared Lives scheme and the household involved, below is ‘James’ story, which illustrates that with the right planning, investment and back up, Shared Lives can work for people who have been labelled ‘complex’ or ‘challenging’. We are keen to talk with colleagues involved in the Transforming Care agenda about the potential for Shared Lives as a route out of hospital for people with learning disabilities:

After a lengthy stay in a residential hospital for people with learning disabilities, James was discharged home with depo medication to help to control psychotic episodes. On his return home, James was abused by a family member. As a result, James was taken to a place of safety by the police. He was then given future support and accommodation options which included Shared Lives.

James decided that Shared Lives was a good option for him and was matched with a Shared Lives carer called Phil. Phil already had one person living with him in a Shared Lives arrangement and he also had a lot of experience. He had previously supported adolescents as a foster carer and was experienced in supporting people with ‘challenging behaviour’.

Phil supports James to experience lots of new things, including supported employment, independent travelling, grey hound racing and fishing. James went on holiday with Phil and his family and joined in with all that they did. They enjoyed this break together and it provided them all with respite from day to day life.

Whilst living with his Shared Lives carer, James’ depo medication was assessed and discontinued due to the risk of long-term side effects. His mental health deteriorated and he returned to having periodic psychotic episodes. When James is unwell which has been occasionally, he is readmitted to hospital, sometimes under section.

When James is well he lives happily with Phil. He has a clear support plan, with additional Shared Lives support carer input to enable Phil to take regular breaks. James knows this person well and her support is flexible, depending on James and Phil’s needs at the time. For example, sometimes she moves in so James continues to live at home when Phil goes away, which means minimal disruption to James’ home life. At other times James can go to her home, where she provides day support and overnight respite. James also has regular input from the community learning disability nurse and community psychiatrist.

James’ Shared Lives scheme worker is honest in saying that the Shared Lives arrangement can be challenging at times especially when James’ mental health deteriorates. But with the good support systems in place which are reassuring for James and Phil, both value the family life their share and neither could imagine James living anywhere else.

Above and beyond

This is a guest blog from our Executive Director of Support and Development Anna McEwen who writes:

Yesterday I visited Paula and Ian who live in Beckton, London.  It was like going to visit old friends as I’ve known them for many years in different roles.

Ian moved in to live with Paula and her family in 2000 and Paula has gone through many incarnations of regulation including registering as a small care home before joining Newham Shared Lives scheme when it was established in 2009.  When Ian first moved in, after his former foster mother died, Paula’s children were both under 5 – now her daughter is a student nurse and her son has just begun a scholarship playing basketball in America.

It was wonderful to see them both, but this time the purpose of my visit was to hear from Ian’s health journey of the last year.

It was June 2015 when Ian began to feel unwell, he had a high temperature and wasn’t eating – something that is really unusual for him.  So, Paula took him to the GP who initially thought it was a viral infection. When he got no better, Paula took Ian back to the GP who sent him for blood tests.  Still no improvement and Paula knew something was badly wrong by now, Ian was tired, lethargic and his temperature kept spiking.  The next time he went back to the GP he was fast tracked to hospital where he underwent tests in A&E before being admitted.  He ended up staying in hospital for one week during which time he had an endoscopy operation to unblock a bile duct.  Paula spent all day every day in hospital with Ian who told me it was a bit scary being in hospital.  Paula was there from 9am until 8:30pm each day so that Ian knew that he just had to sleep for the night and then she’d be back there for him.

Paula and Ian
Paula and Ian

Once the operation had been done, Ian initially felt much better and they both had a sense of relief.  Unfortunately, they were then told the news that the tissue removed in the operation and sent for biopsy was cancerous.

For the next couple of months, Ian went through a number of tests and scans and was then referred to a specialist at the Royal London hospital.  Paula talks about the consultant being a wonderful man who always took the time to talk to Ian, explain things to help Ian understand and then performed the major operation to remove Ian’s gall bladder and tip of the pancreas.  Again Paula spent each day in the hospital with Ian throughout the 10 days he stayed there.  He was initially very weak after the 5 hour operation and spent time in intensive care, but the hospital put in extra support for Ian in those early days.

Ian was also visited and blessed in hospital by Father Bob, from Ian’s local catholic church, who has been supporting Ian and other disabled people to visit Lourdes each summer for the last 15 years.

Following the operation Continue reading

A shared life is a healthier life

Over 200 Shared Lives carers took the time to tell us about the difference they make to people’s health, for a proposal we are developing to get Shared Lives established in the healthcare sector. 73% said they had received positive feedback from an NHS colleague about the difference their support was making to an individual’s health, such as:

  • The GP stated that my care was remarkable and hoped I would continue to support this person.
  • I offer respite care to someone with bi-polar disorder. The CPN noted that staying with me when she has been in a depressive state has meant not having more formal support from the mental health team.
  • He has been her dentist for 40 yrs and has never seen an improvement until she came to live in Shared Lives.
  • The Mental health nurse reported that the person concerned was a changed woman: more confident and happy. The nurse said that she thought it was wonderful how this lady was able to voice her own opinions as she had never done this previously.
  • The nurse said “it’s obvious he is confident and comfortable with me as they have not been able to do this procedure successfully before”. We are very proud of him and his progress.

Here are some of the most common reported health outcomes. I fond some of them jaw-dropping: The person adopting healthier lifestyles, including dozens of accounts of significant weight loss, managing diabetes and giving up smoking

  • I am helping someone go to the gym twice a week as she is very overweight. She went by herself for the first time yesterday
  • Took a very obese service user to Slimming World. Helped her with her diet, and she lost 6 stone while with us.
  • Diabetes controlled through diet rather than medication. Weight loss through exercise and healthy eating.
  • One lady has lost 5 stones in weight in 5 years. Her BMI is perfect and she has much more energy to enjoy things she loves doing like dancing. One man has been supported with physiotherapy and orthotic shoes to help with pain management and posture, he used a wheelchair to visit shops. He does not need to use a wheelchair any more.
  • Both our long term residents have now been discharged from Asthma clinics and have lost 4 and a half stone between them
  • I helped achieve his aim of giving up smoking after he had smoked for 40 years

Tackling misdiagnoses and making reductions in unnecessary medications

  • When S came to us she was on a lot of medication. I asked the doctor if we could review it and she came off 3 different medications and she is much more awake.
  • She had been on epilepsy medication for 30 years before she came to us for no obvious reason. She has no seizures.
  • They thought she was deaf until I investigated further and found she hadn’t had her ears syringed for over 5yrs. Easily sorted out by visit to Practice nurse at GP and her hearing is fine now.
  • This person was in a wheelchair due to being over-medicated, because his doctors thought he was very severely epileptic, and subsequently massively over-medicated. We found out that most of his “seizures” were behavioural, and they gradually reduced his epilepsy meds. From having around 4 “seizures” per day, he hasn’t had any for 12 months. He now walks and attends college. The GP stated that this was directly attributable to care we had put in place.

Improved health and wellbeing leading to reduction in use of NHS services

  • The gentleman who is with us has now finished 6 monthly hospital visits and just sees the nurse once a year.
  • All of the people we support have been signed off from community support nursing because their conditions are being kept monitored and controlled while in our care.
  • Neither gentlemen have needed A&E whereas under their previous arrangement, they’d used it 4 times in 2yrs.
  • One gentleman was admitted to hospital about once a month, but not at all whilst living with us

Serious illnesses which had gone undiagnosed, including several instances of cancer, being diagnosed and treated

  • Alerted GP to early cancer symptoms
  • The cancer patient received treatment “just in time!”
  • One person had prostate cancer. We recognized the symptoms (that he must have had prior to moving in with us!) we supported him throughout all his treatment and getting to and from hospital.

Continue reading

Post-hospital stroke rehab in ordinary family homes

We’re gathering stories which illustrate the diversity of people using and providing Shared Lives at the moment, and also making the case that Shared Lives could be much more widely used as home from hospital care. Sarah Havard, manager of Newham’s Shared Lives scheme, kindly provided two stories, which bring those strands of thinking together.

“I had an enquiry from a social worker in the hospital team, who had read an article about Shared Lives I put into the weekly adult social care bulletin. From making this contact we have now supported two individuals who had had strokes, and were well enough to no longer need hospital care, but their home situation meant that they were unable to return home at that point.

‘Brigita’ is an older lady from Eastern Europe, who had been living in unsuitable overcrowded shared accommodation, and had been working in hotels. After her stroke, Brigita was given an initial six week respite placement with us, with the idea that she would then be well enough to present as homeless. This was then extended to a three month placement. Every time I meet her I am moved by hearing her speak about how grateful she is to her Shared Lives family for the support and friendship they give her. For her, as an isolated woman in this country, who speaks very little English, I believe that it has been a really important part of her recovery, that she was able to live as part of a family, and not have to worry about anything but getting better.

‘Khalid’ is a younger man who has had his third stroke, and was unable to return to live in his own flat on his own. The social worker was keen that he didn’t have to go to a nursing home, at such a young age. We were able to match him with a Shared Lives family originally from the same city in Pakistan as his own family. This has been really helpful for his family, as this has been a difficult situation for them to come to terms with. Being able to talk to the Shared Lives carers in their own language, and feel Continue reading