Stroke survivor Brian gets ready to move on

This story from Shared Lives South West shows how Shared Lives is providing great health care as well as social care. The story can be found here. It’s a great contrast with the story about room renting which hit the headlines last week – see my previous blog. We are working with NHS England and 7 local NHS CCGs to develop new health care options. Here is an extract from the full story with thanks to Shared Lives South West, who continue to inspire us all:

If you rewind a year, Brian Lee’s future looked bleak. While out walking in local woods he had a stroke and ended up in intensive care and endured a four-month hospital stay.
His health deteriorated further while in hospital as he also suffered two minor heart attacks and Brian was extremely weak.

The medical trauma left him with complete memory loss and his mobility was severely compromised- making it difficult for him to walk even short distances.

Fast forward to now and his life couldn’t be more different.  Thanks to the support and care he’s received from the Shared Lives team and ultimately his Shared Lives carers Jeanette and Alan Eames as well as his own determination, Brian is well on the road to recovery.

He’s recently managed to plan and go on holiday to Thailand and is preparing to move out to his own flat and live independently.

“I was so stubborn and determined. I had to prove to myself that I can still do things,” said Brian.

“Jeanette and Alan have helped me through it all. I was decrepit feeble creature when I arrived at their home in March.

“I couldn’t walk down the drive, now I can nip up to town. I never dreamt of being so independent again when I came out hospital.

Since moving in with the Eames’ family, near Okehampton, they have been there to support him every step of the way-  from helping him with appointments to liaising with his friends to help him move forward and sorting his medication and preparing him for his trip to Thailand, where he visited with no support. It was paramount his carers got him ready for the trip and made sure he was able to manage all his medication.

The Shared Lives team were also on hand to make the match with the Eames family. They charity’s Funding and Benefits team also maximised his benefits.

“They prepared me and made me ready for life outside,” said Brian.

“I think what was most important to me was to realise limitations early on, then I think you have to scale back on your expectations, then you can move forward positively.
“The main help was with my medication, that was a key thing. With Jeanette’s help there were visits to the doctors to make sure my balance of medication was right, as when I came out of hospital it was all wrong.

“I was on knock-out drops, I wasn’t living life as it should be. By 11am I wanted to go back to sleep again. I spent most of my time just sleeping. It was too much and there was a real temptation not to take them.

“Jeanette got it sorted out for me.”

“I also made sure he was taking the right medication at the right times to start. Now he has pots and has hang of doing it all himself,” said Jeanette.

Banking also became difficult as he struggled to remember numbers.

“If you ask me about a phone number or bank details and I wouldn’t have a clue,” he said.

With advise from Jeanette, they decided to change passwords to key dates that he could remember.

“That way I could do somethings myself with support,” said Brian.

The full story is here.


More than just a room

There has been a great deal of interest in the media in a small start up company called Care Rooms, which has been developing an idea in which people would rent out their spare room to the NHS, for use by older people who are well enough to leave hospital but not well enough to return home. The hosts would be paid £50 a night and would microwave three meals a day and ‘provide conversation’. If personal care was needed, this would be provided separately by services visiting the host’s house. Shared Lives has been mentioned in some of the media coverage, which has mainly focused upon the risks of the proposal.

One of the problems with Shared Lives and Homeshare being so little known, is that people frequently ‘invent’ them, often without having thought them through that carefully. Recently we saw a think piece from a firm of public service experts describing its groundbreaking idea for younger people to live with older people: Homeshare is a decades-old international movement across 16 countries used by thousands of people.

What struck me about the reporting of Care Rooms was how little of it was from the perspective of the (mainly) older people who would be its recipients. Why would people who are well enough to leave hospital want to be a lodger in a stranger’s spare room eating microwaved meals, rather than going home? In Shared Lives, which is already being developed as home from hospital care with support from Dept Health and NHS England, the benefits to an isolated older person are that their Shared Lives carer will provide personal care (because Shared Lives is a regulated care service with the training, back up and safeguarding processes needed to do so) but perhaps more importantly, the Shared Lives ethos is that the participants get to know each other before deciding that they will get on: it’s a social arrangement in which the older person is welcomed into the household. Even when it is used for relatively short periods of post-hospital care such as stroke rehabilitation,  people can form connections which outlast the ‘formal’ care provision. That sense of belonging and community appears to lead to people recovering faster and further because health and wellbeing are closely linked. Care inspectors CQC say that incidents of neglect, poor care or harm are rare in Shared Lives households, compared to their frequency in care homes and home care services: this is partly because Shared Lives carers go through an approval process lasting several months, but also because people choose to be together and enjoy each other’s company.

That kind of ‘care’: care as an emotion rather than just an activity, cannot be bought. It does though require thoughtful selection, matching and choice-making to happen. It’s taken the Shared Lives sector 40 years and the work of tens of thousands of participants to put that in place.

Ken the artist: Part 2

I shared Ken’s story courtesy of the Medway Shared Lives scheme a few days ago. I see that Ken and household have also been visited by government Minister, Tracey Crouch MP, who wrote on her Facebook page on 8 September:

I met two incredibly inspiring local ladies today – Sarah and Vicky. What is so special about them is they are carers with Medway Shared Lives, a brilliant initiative that is operated by local authorities across the country which provides longterm, short term or emergency homes for vulnerable adults.

Sarah invited me to their home to tell me about Shared Lives and what they do, the value they bring (both in terms of to the individual emotionally but also to local authorities financially) and of course the challenges they face. It was comforting to hear that Medway Council – Service updates and information has recently demonstrated their commitment to the scheme with a welcome increase in carer rates after several years of none. I met Stella (53) and Ken (70) who both have a learning disability and who Sarah and Vicky have hosted now for several years. It is as if they are part of the family and you could tell instantly that both Stella and Ken are settled and very happy.

I think the scheme is a brilliant idea and I wanted to take this opportunity to promote it more widely. If you think you could host an adult who needs just that little bit extra support so they can live independently rather than go into a residential care home, then please do click on one of these links:…/car…/becomeasharedlivescarer.aspx

Caroline’s story

This story was told to us by Sara Podmore who manages the Telford and Wrekin Shared Lives scheme:

Caroline, 26, had been in the Navy. She was being severely bullied whilst training to be a medic. She was initially thrown out of the Navy but after support from charity, Combat Stress, the Navy now supports her in getting help and treatment with severe depression, OCD and post-traumatic stress.

Initially Caroline had been allocated to a support worker in a supported living set up. She had some hours support each week but this was predominantly to help with paperwork. “I wasn’t well, I was basically put into the house and left. I ended up taking a massive overdose and then ended up being sectioned.

I had never heard of Shared Lives and my social work ended up introducing me to Linda and Owen, I don’t remember much from this time but I remember coming round for tea visits before moving in. This was April 2013.”

The Shared Lives team felt that Linda has the listening skills that would be needed to support Caroline through this period of her life. Shared Lives worker, Cath, vividly remembers those first visits. “Caroline looked so small, curled up on the sofa crying looking ill. She was in what looked like a trance. She really didn’t care.”

Caroline describes her OCD: “I stroke the light switches, I check the doors all the time. It’s better to laugh about it if I can. Linda tells me to leave it and she will check it, this really helps, otherwise I would sit by the door all night.”

Caroline says of her first few weeks living with Linda, “The family were so welcoming; it was amazing to be part of the family. I settled in really quickly. I didn’t feel like I was treading on eggshells, there was no pressure. I felt I could approach the carer and they would be non- judgemental.

“In that time I feel my confidence has changed. I’ve got a strength I’ve never had, I’ve had lots of encouragement, I’ve talked for hours with the carers, there is no such word as ‘can’t’.  I do a lot of laughing. I’ve slowly come off some of my medication too in the time I’ve been here which is great. I haven’t had any help from the mental team- Linda has been my mental health team, they have abandoned me. I’ve even managed to have contact again with my family. I see my mum again now who I couldn’t before as she couldn’t deal with me being ill. We do family holidays now too which is amazing.

“Now I work 26 hours a month and have completed my NVQ 2. I run now too. We all eat dinner together. Its important as I can chat, considering it’s their house its amazing they are always there for me. Things like Christmas are amazing we get so many gifts, I never expect it.

“At the very start of my journey I didn’t want to be in the world- but since coming into this placement it’s been great. I’ve not had a dip since I’ve been here and I’ve learnt to listen to my body.

I would tell other people when talking about Shared Lives: there is hope no matter how unhopeful you feel.”

Merry Christmas!

I’m very grateful for this great guest blog from Sarah.

Sarah, who lives in Yorkshire, is a poet,a spoken word entertainer, inspirational speaker and drama-based trainer in the (sometimes tricky) subject of Dementia. She is also a qualified life coach but prefers the term “useful chat” to “coaching”. She cares for her own disabled son full time, is a Grandma to three (soon to be four) rowdy children, is addicted to Coronation Street and is totally dependent on a well maintained diary and her never ending To Do list.

Sarah lives in Yorkshire and has been providing short breaks through Shared Lives for a year. She knows what a fantastic service this can be because her own son has used Shared Lives for his own short breaks in the past. Sarah writes:

Christmas seems to be a bit like a popular yeast extract spread; loved or loathed.

Just mention the C word to anyone and it’s almost guaranteed to receive one of two responses. Either “Oh it’s too early”, “can’t afford it”, “hate bloody Christmas” and other negative (almost visceral) reactions or the opposite response of the starry eyed, wistful “Oh I LOVE Christmas”, “I can’t wait”, “such a wonderful time of year”.

However we feel about it, we will navigate life a lot more easily when we accept that others opinions do not always match our own.

I have had to learn to love Christmas, my son loves it so life is easier if I do too. When I say he loves it, I mean he REALLY loves it. He has a Santa duvet cover, He has snowmen in his bedroom, he listens to Christmas music on repeat twenty four hours a day, we keep a countdown to Christmas poster in the kitchen. You may be thrilled (or horrified) to know that we have a mere one hundred and thirty sleeps to wait until we can open our presents and set fire to that pudding.

One of our Shared lives links was a match made in heaven for us. We have a Shared Lives visitor who loves Christmas. He brought his own festive bedding with him (there was no need we had plenty!). He plays Santa Claus is coming to town on repeat (genuinely not annoying where the entire family has become completely immune to living in a Bing Crosby background noise environment).

On one particular visit he took it upon himself to take all the decorations out of their storage and put them up. It was June. We had a tree up. He did a sterling job too: Every bauble, fairy light, Christmas wind up musical item, bunting, holly, mistletoe, ornaments. all displayed with expert care, ready to surprise me with.

Deciding to adopt a “if you can’t beat them- join them” attitude, I joined in and so did my son. We all donned a Santa hat and got stuck in, tweaking the lights, adding the tinsel, singing carols, talking about what we hoped Christmas would bring us all this year. We talked and listened and laughed and at one point I sat back and just stopped to enjoy the moment, to commit it to memory, to drink in the fun and the pure joy. I am not embarrassed to admit feeling a little emotional- I suppose Christmas is a nostalgic time of year.

Neither of these young men were glued to their iPads, neither was sitting in their head phones drowning out human communication, they were both engaged, connected, happy and relaxed.

Later that night I was trying to navigate the darkness of my bedroom as my early-rising husband had gone to sleep ages before me. As I fumbled around the end of the bed trying to locate my Pyjamas, I felt something unfamiliar. made of fabric, with beads/ buttons on. I managed to find the torch on my mobile- there in the beam I see that our guest had really had done a thorough job: it was a Christmas stocking hanging on the end of my bed.

This is just one of the many aspects I love about Shared Lives. We have the freedom to connect with people in a way which truly makes sense to them, on this occasion, it made sense to us too. Our customers have the freedom to not only be at the heart of what we do but to actually lead the way we do it.

I have often heard Shared Lives carers talk about how much they learn through their roles and I second that with a great big “YAY” as I raise my glass of sherry and ( whether you love it or loathe it) wish you all a very merry Christmas.

The shelter of each other

Our colleagues and members in Northern Ireland hosted an event for commissioners exploring how Shared Lives could be developed as a new form of short breaks, day support and home from hospital care for older people.

We are grateful to Fionnuala McAndrew of the Health and Social Care Board who helped convene and kick off the day and to Mary Hinds, of the Public Health Agency, who summed up beautifully, drawing on an Irish proverb I’ve not heard before: We live in the shelter of each other.

I’d be willing to bet that that rings true for you as much as it does for me. For years now, the ideal living situation through the eyes of long term care and support services has been independent living. It’s not a bad goal, particularly when contrasted with institutional alternatives. But that language doesn’t tend to figure in our own descriptions of what we dream of, unless or until our independence is at risk. When people describe happiness, for most (admittedly not all) of us, it involves having people  we can rely on. In other words, we dream of interdependence, not complete independence.

This can be an uncomfortable idea for long term support services which are wary of ‘creating dependence’. Few of us would want to be dependent on a service. But perhaps it is not so much that becoming dependent is ‘inappropriate’ to support relationships, but that the way we construct support relationships can be an uncomfortable fit with our naturally interdependent nature. People working in social care often find their roles put strict limitations on the definition of ‘care’ and are too rushed and impersonal to feel ‘social’. This incompatibility between the human nature of both people who give and those who receive long term care is at its most stark when the intimacy of personal care is carried out by a succession of strangers.

Shared Lives is not about dependency in the pejorative sense and for some people it is very much a stepping stone to getting their own place. Half of the people using Shared Lives Continue reading