We will learn no others

“Friendly and loveable” Ben King died aged 32 after spending over two years at Cawston Park Hospital last year. Ben’s was one of three concerning deaths since 2018. The hospital was in special measures at the time of his death and has now been closed. According to the charity Inquest, the inquest into Ben’s death found that the breathing problems which ultimately killed him, were down to a preventable health condition, caused by obesity which had got out of control when his day support and activities were cut. When he died, there was not even any plan to help him lose weight, despite multiple hospital trips. He was also hit, hours before his death, by hospital staff, who failed to take his condition seriously enough to get him life-saving treatment. So much about this story is familiar from other tragedies: the fuller life led with his Mum, and then, when his Mum could no longer care for him, the decline through unhappy care services, behavioural issues, institutional care, poor medical regimes and diet, and in the end a bereaved mother campaigning for the truth and some semblance of justice.

It is the failures and abuses immediately surrounding his death which shock most: a staff member ‘struck’ him twice when he was already dangerously ill (I can find no mention of a police investigation). Another ignored him as he died.

But in every case of this kind, it is the long-term, systemic failures which should make us most angry: the inability of expensive services to help Ben live as well as he had done with his Mum, who would have had a fraction of the state resources that were spent on Ben’s care. The budget ‘savings’ made by withdrawing a fitness regime which would have kept him alive. The increasing use of powerful drugs to keep him sedated, with little apparent awareness of how dangerous they were.

The inquest makes clear links between Ben’s hospital admissions and bad choices made by highly-paid experts. Why were those links made by none of those experts? The longer someone remains in a medicalised environment, suffering repeated and worsening crises, the easier it becomes for professionals to see that person’s medical and disability labels, their ‘challenging’ or ‘complex’ nature, as the reason things are going wrong for them, rather than decisions the experts are making, which come with all the reassuring rigmarole of diagnoses, risk assessments, multi-agency planning, case notes. Few if any would have a clear picture of how much better his life had been just a few years before. Did his mother’s concerns become easier to dismiss? Some professionals are prone to talk of families’ (particularly mothers’) ‘over-protectiveness.’ And of course, the more unprotected their son or daughter appears, the more protective they try to be. Services, however, are never described as ‘under-protective’, even when their complacency leads to people’s deaths.

As someone becomes de-humanised, their life diminished, their choices and dreams shrunken, their medical issues more enthusiastically examined and labelled, their distress pathologised, then failures or abuse by individual workers become more likely. There will have been skilled, compassionate people working at Cawston Park Hospital. Its parent company has a social media feed full of lovely-looking care and activities (no mention I could see of Ben or the inquest). But there is a long history of organisations which charge thousands of pounds for their expert care attracting people who are thoughtless or cruel, or who become so.

Another young life lost. Another grieving family. No doubt even now, someone well-paid to provide “strategic leadership” to the services which failed Ben and many like him, will be saying that ‘lessons will be learned’. But we remain hell-bent on ignoring the lesson that disabled people and their families have learned in their thousands for centuries: there are deadly risks and harms inherent in incarcerating people out of reach of family, friends and community. For as long as we continue to ignore that lesson, we will learn no others.

It’s so much quieter here than on the ward

The World Health Organisation showcased the South East Wales Shared Lives Mental Health Crisis Project at their global launch of the WHO Guidance on community mental health services: ‘Promoting person-centred and rights-based approaches’. In our seminar to celebrate this (film on YouTube), we heard from Nikita and Mags who talked to Emma  Jenkins the South East Shared Lives Mental Health Crisis Project Manager who had matched them together into a life-changing Shared Lives arrangement. Here is some of what they said:

Nikita

Before Shared Lives I had no fixed abode and I kept going back to hospital. I had a CPN and treatment but I was feeling awful and suicidal.

I had no idea what Shared Lives was – I was pretty apprehensive – I’d never heard of anything like this in my life. Kerry told me I could stay with someone rather than be on the ward I wanted to meet Mags at her home not on the ward and when I went to Mags’ house I knew it was a great opportunity for me to grow and so much better than the ward.

Mags

Before someone comes to the house, I will have had some paperwork and discussions with my Shared Lives worker but it’s not until you meet the person and they are sat in front of you that it becomes real. The Shared Lives worker knows my strengths and my experience and will have matched up an individual they think I can work with. But at the initial meeting I need to quickly establish a connection to see if I can work with them and they want to work with me. It’s that mutual respect that matters.

Nikita

Shared Lives is a really important opportunity because the ward can’t offer you the same amount of one-to-one attention. They have limited resources and you can’t do a lot of activities which would promote your wellbeing after your stay like cooking, going walking, seeing your family. It’s so much quieter here and great to be able to be outdoors with someone’s support.

Mags

I’ve been lucky enough to have several arrangements. You have that opportunity for one to one. It frees up space on the wards which is also good. You have time to introduce the individual to community activities, education, exercise. I’ve had some really good feedback from people who have said it’s much better for them.

People start to live normally again – just ordinary things like being able to use an iron, or cutlery again, which may be banned from wards because they are a self-harm risk.  

Nikita

When I was at Mags I was able to do my university work on my laptop. On the ward I couldn’t go on my laptop so I was already behind which was making me so anxious.

Mags

I have a garden here. I find people are up for being introduced to new things – whether its gardening, books, exercise.

Nikita

I trained for a half marathon at Mags’ and did the run just after I moved. It was a huge achievement for me just being able to run when I was at Mags’ which I couldn’t do on the ward.

Mags

I went to watch her at the finish and me and her Dad cheered her in – it looked hard work!

Emma

It’s obvious that you’ve formed a friendship – you don’t have to do that after the arrangement has ended, but it looks like that’s natural for you both?

Mags

The person who comes to your house is a human being – we have interests in common and we get on!

Nikita

I’ve started to live independently now – lots has changed but it’s all positive. It’s important for other people to know about this. It’s not an option for me to go back into hospital – it’s not something I think will happen. I want other people to know about Shared Lives as well.

To find out more about the South East Wales mental health crisis service read the WHO report or find them here.

Sheik, Roumanah and Kirsty

Here’s a lovely story of inclusion, kindness and creativity from Hertfordshire Shared Lives as we continue to celebrate Shared Lives week.

Kirsty Stubbs moved in to live with Sheik and Roumanah Tafajoul’s family in February of this year. Kirsty has an acquired brain injury from an accident five years ago and had been in a Care Home ever since. Kerry Faulkner from Hertfordshire County Council Shared Lives writes about how they made the match made in the middle of the pandemic:

“Kirsty’s mother contacted me and was extremely keen for her daughter to be in Shared Lives. We had to be creative with matching as we couldn’t do any of the usual processes as this would mean Kirsty having to self-isolate in her room for two weeks if she even had a tea visit and the carers were not able to visit her due to the restrictions, so Sheik and Roumanah and their family Skyped her every week for months so they could get to know each other. Kirsty’s family met the Shared Lives family and worked with them to ensure a smooth transition. The room was adapted for Kirsty’s needs as she is partially blind, so they installed an ensuite shower room and an OT visited to install grab rails etc.

“Just after Kirsty moved in Sheik and Roumanah found out they were having another baby (which was a bit of a surprise for us all!) but we all worked together to ensure there was a contingency plan in place to allow continuity of care for Kirsty and the other gentleman they support in Shared Lives, with an additional ‘support carer’ approved alongside the one the family already had.”

Kirsty’s mum Joyce writes:

“The Shared Lives secret should be made widely known – amongst health and social services, charities and many more.  Since my adult daughter, a head injury survivor, moved to her wonderful new Shared Lives family in February 2021, she has been able to enjoy family meals, movie nights, helping the children with their spelling, listening to their bickering and simply being accepted and valued for the person she now is since her accident. Working with the family is a pleasure, most especially since the family has now expanded to include a new-born baby girl. Kind, caring families with appropriate experience and a suitable spare room are out there, as are countless adults with particular needs.  So please spread the word so that more people can be looked after by those who know how to care.”

Meet the sharers

Our new Twitter project is @MeetTheSharers, a brand new, year-long, rotation curation project from @SharedLivesPlus. Every week, for the next year, we’ll be handing over this account to a different Shared Lives family, so they can tell you all about their lives, in their own words.

The Portwoods are no strangers to the media spotlight, they were featured on @GranadaReports in February and now get recognised on the street. See the ITV news film here.

Emily and Allen provide Shared Lives support through @meetmacintyre, one of a network of Shared Lives schemes across the country. Emily is a full time Shared Lives carer, she loves the gym, Slimming World healthy eating plans, cooking, driving to nice places and walking. Allen is a vehicle technician and owns his own garage, he works each day to assess and fix cars then comes home to his Shared Lives life.

Image

Molly is 26, she works with children in an after school club, loves the gym, yoga, Pilates, and Zumba. During lockdown she has baked, walked and kept her friendship group going each Wednesday. Beth, on the left, is 22. She doesn’t live with Emily and Allen, but comes to visit them several days a week as respite care.

Tyler is 18 and is very much into his social media networking- he loves posting YouTube and TikTok videos. Tyler is an animal lover and is enrolled on a college course that involves learning about animals. Robert is 61- he is interested in films, he likes the musicals. Robert loves to socialise with people, he attends the Macintyre day centres and is looking forward to going back to the visual impairment centre when it opens up.

It’s a cosy household, which also includes Emily and Allen’s sons (Spencer, Declan, Harley, and Jordan), dogs Bella and Cadbury, a handful of guinea pigs, and a tank full of fish.

What can foster care learn from matching in Shared Lives?

Late last year, Ofsted published a report on matching in foster care, which concluded that

“Matching children to the right foster families is critically important for children’s futures. Good matching decisions can help to ensure that fostered children have a secure base, feel loved and can enjoy their lives. When matches do not work, it leads to further distress and instability for children, many of whom will have already experienced significant previous disruption and trauma. Unsuccessful matches can result in foster carers taking a break from fostering or deciding to stop fostering altogether, contributing further to the longstanding nationwide shortage of foster carers.” Matching in Foster Care

This seems unsurprising. As Ofsted found, “When we asked children what they liked most about their foster home, they said
they valued feeling loved and being treated as part of the family.” The Shared Lives sector has two key processes at its heart: an extensive, in-depth and values-based recruitment process (currently being modernised through an exciting project involving new tech) and matching, to ensure that people who share their lives are compatible, and that they actively choose each other. The recruitment process is needed because the Shared Lives carer role, like the foster carer role, is highly responsible and autonomous. The matching process is because great Shared Lives is as much about love as it is about skill and professionalism, and few of us love who we are told who to love.

It should take research for everyone involved in care of any kind – adults or children – to know that love is central. Caring is an emotion, as much as it is an act. There is an ongoing debate about professionalisation and professionalism in social care and in children’s services. We want and need people in caring roles to be highly skilled, to have the right knowledge and experience and to be able to work within a regulatory framework. But we owe it to those amazing people willing and able to take on that demanding work to create roles in which they also be fully human. And we owe it to everyone who finds themselves relying on strangers for support at their most vulnerable moments to ensure that they choose the people who will do that, wherever possible.

Boundaries are vital to good, safe services. But we need to ensure that the boundaries we put in place are for the benefit of the people involved (on both sides) in the caring relationship, not to make risks to services easier to manage at scale. As Emma shares in this Fostering Network blog, overly rigid interpretations of rules, and a lack of trust in her and her foster family’s decision-making led to her leaving a stable household for increasing chaos, only resolved through her and her foster family fighting to stick with each other against the odds:

“I went through hell until I was 21…I was not allowed to stay at my foster mums as social services said that I left care. My foster parents tried to fight them but they were told they’d have to stop fostering if they took me in… My foster family was meant to leave me when I left there at 16, but they never did. They have always been there for me and they call me their own just like I call them my own family. That is unconditional love, it’s what young people need as they go into adulthood.”

Matching and professionalism can co-exist, and they must, if we are to have any hope of reducing the unacceptable number of children and young people let down by a care system which doesn’t always know what ‘care’ really means to them.

Lives lost

We have been extremely sad to learn of a small but growing number of deaths within Shared Lives households and amongst those who use Shared Lives for day support or short breaks. We have been told of two Shared Lives carers who have sadly died from COVID-19. One bereaved partner continues to care for the person who lives with them, during this most difficult time. As a national network, we are trying to ensure that every life lost is recorded. We will be talking with members and families over the coming months about how best to celebrate everything these individuals achieved together, and to mourn their loss. Their numbers, sadly, will grow, but we must not let them be reduced to numbers: each was an individual who gave so much to those they shared their lives with, and who was much loved.

The thoughts of all of us at Shared Lives Plus are with the families and households who are grieving.

Compassion fatigue

This is a guest blog by my colleague Ali Miller who leads on our work developing supportive shared living for survivors of domestic abuse and modern slavery. It originally appeared here.

Looking ahead to the Easter bank holiday weekend might not feel like such a luxury this year. Many people in the Shared Lives community are facing additional pressures and having to rise to challenges they never expected to face. So how do we suddenly adapt and take on these new challenges?

We all know where we’re at with our weekly routines and this is the same for people accessing Shared Lives. Whether that’s attending day services, getting together with friends, hitting the gym or volunteering, having to give up the things that we love is hard. Naturally, it can be even harder for people who really depend on these routines, or who may not fully understand why they’re missing out.

It’s a big challenge for people living in Shared Lives and the Shared Lives carers who support them. For carers, trying to help meet the unmet needs of people you care about can feel relentless when life is so restricted. As much as you feel someone’s frustrations and understand their emotional struggles, even the most empathetic person can develop compassion fatigue.

Compassion fatigue happens when someone becomes so drained and exhausted by the behaviours and needs of the people they support that there are real physiological changes in the brain. This impacts people’s ability to connect and empathise with the people they support in the same way. Experiencing compassion fatigue can cause tension and guilt but it is a normal human response to supporting people in crisis and distress.

Shared Lives carers shape their lives around connecting with people and supporting them to live fulfilling lives, so feeling stuck or helpless can feel like you’re not getting it right. A common response from professionals is to bombard carers with strategies and whilst these can provide solutions when the time is right, for anyone experiencing compassion fatigue it’s unlikely that strategies will be heard or taken up.

It’s easy if you’re used to caring for others to overlook your own needs. The same traits that make people great Shared Lives carers- empathy, compassion and genuine care, can turn into compassion fatigue unless self-care is prioritised. In fact, the antidote to compassion fatigue is self-care.

There’s no doubt that self-care seems even harder to make space for when lives are being turned upside-down, but it is vital. Giving your body and mind a mini-break ultimately helps everyone; it’s not selfish or indulgent, it’s a necessity.  Here are our three top tips for self-care

  1. Let go of perfectionism.

Remember that struggle is normal. If someone living with you is struggling, it’s not always fixable. You can be helpful, supportive and look for strategies, but you can’t always ‘make it all better’ and that’s ok. Just by being there, listening, and reminding someone that you care is helpful in itself. If you’re doing your best, you are doing great.

  1. Take time for yourself.

Self-care comes in many forms and it’s important to meet your needs. So, you can’t get to a yoga class or meet your friends down the pub, but how about having a bath, phoning a friend, cooking a nutritious meal or getting an early night- remind yourself that prioritising your needs helps everyone.

  1. Make mindful moments

We can get consumed by stressful moments, especially when our resilience is running low. If you find yourself in a tense moment, focus on something distant like the branch of a tree bobbing about outside your window, let it take you out of the moment. If you struggle with being mindful in the moment, but you’ve dealt with something stressful, take your phone to the bathroom and listen to a five-minute meditation.

Above all remember that you are important and worthy of self-care. So, this Easter weekend try to give yourself permission to check in with your own needs. If you find yourself asking for help, doing a YouTube Zumba class, or having a lie-in, congratulate yourself on meeting your needs and being kind to yourself because that is what success looks like right now.

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Sharing lives and self-isolating

Across the UK, thousands of Shared Lives households are at home as self-isolation becomes mandatory. This means that disabled people, people with mental health problems and others who need significant support are living in a safe place with their Shared Lives carer and for many, this is the safest place they could be. Unlike other services which rely on a staff rota, no one need come in and out of the home and the household can be more resilient and less disrupted by self-isolation than services which lose workers who are self-isolating but currently unable to get tested.

We also know that Shared Lives households are under pressure:

  1. 80% of Shared Lives carers are over 50 and 20% are over 70 and themselves in the at-risk group.
  2. Usually, Shared Lives should not be 24/7 care, but at the moment it is: this can mean huge pressure on households as routines are disrupted and there is no break from caring for someone who is distressed and whose behaviour may be difficult to manage.
  3. Like others, Shared Lives households are largely without protective equipment (PPE) and facing shortages of basics and food caused by panic buying.
  4. As short breaks and day support services are cancelled, many self-employed Shared Lives carers are without income, and the government has not yet addressed this for the self-employed. This also means there are Shared Lives carers with capacity to do more and who want to help. We’ve had members wanting to open their homes to patients and NHS staff.

At Shared Lives Plus, our team moved quickly to 100% home working and online and have been working flat out on two priorities for our members: inform and connect. People need the right information – not always easy when most government info has been unclear, incomplete or has needed to be corrected. Not helped by government making a drastic u-turn in its strategy (which was the right thing to do: their modelling turned out to be wrong) but then telling people nothing had really changed: far better to have been clear that the strategy had changed and why. Connection will be of growing importance the longer this situation continues.

We are addressing the four pressure points above:

  1. We have issued guidance for local organisations on identifying and prioritising the households most at risk, mitigating risks where possible and planning for possible scenarios, including infections within the home and Shared Lives carers being unable to care. We have outlined fast-tracked procedures to get new support carers approved.
  2. The key message from our guidance on supporting Shared Lives households under pressure is to help the household build its resilience and two kinds of connections: with other Shared Lives households and with neighbours. We are aiming to get a new Positive Behaviour Support advice service up and running shortly if we can resource it. We’re helping members share what’s working and the team are taking calls where people are struggling.
  3. We have been ensuring that Shared Lives carers, and community care services more generally, are being considered along with other social care services, for PPE and giving practical advice. The UK’s failure to plan for PPE demand mystifies me and has left thousands of the people we rely on most at unnecessary risk. This appears to be being rectified, but local problems are still huge. We’ve written to all the supermarkets explaining what Shared Lives carers and Homesharers are why they need access to food.
  4. Government announcements are imminent about support for the self-employed. In the meantime, our advice to Shared Lives schemes has been: do everything you can to support your Shared Lives carers. We will need everyone during this crisis and in the recession which will follow it. Councils have been given funding to support stability in the social care sector, and the good ones are using it to keep providers afloat and social care workers in this vital workforce. We are supporting Shared Lives schemes to identify their spare capacity and consider how Shared Lives carers who are not currently working can safely support households who are struggling, and respond where possible to the need to discharge thousands of people from hospital. Virus testing, adequate PPE and ensuring people and organisations are working as part of one team will be vital in making this work.

I’d like to thank the 10,000 Shared Lives households and 500 Homeshare households who are contributing so much to keeping people safe and well during this crisis, and the Shared Lives Plus team who have made me so proud to work for such a great charity these past couple of weeks.

James and Bronte
James and Bronte digging vegetables at home, taken by Shared Lives carer Andy

“This is my second home.” Help us grow Shared Lives in Wales.

Wales was the first of the four UK nations to have Shared Lives services across almost every Local Authority area and grew nearly a quarter since 2015/16. Over 500 Shared Lives carers open their homes and lives to 1,100 people who need support with daily life across Wales, including those with dementia, mental ill health, older age or young people leaving care.

When Jen first moved in with Rachel, her Shared Lives carer in Bridgend, she didn’t go out, had few friends and needed daily insulin injections. Now Jen’s been able to reduce her diabetic medication, has made friends and enjoys yoga and tai chi: “I walk the dogs, care for the chickens and help around the house. I’m in touch with my family and stay on weekends. This is my second home.”

Rachel has supported Jen for 15 years, working with the ategi Shared Lives organisation: “My life changed and I went through a bit of an upheaval. Shared Lives gave me the chance to work flexibly, bringing up my children and giving someone else opportunities at the same time. Allowing people dignity and to protect their rights is important to me.”

Recently, we met the First Minister Mark Drakeford AM and Julie Morgan AM, Deputy Minister for Health and Social Services, to tell them that with the right support and investment, Shared Lives could create positive outcomes  for up to 55,000 older people in Wales. We are now looking for local authority partners to make that happen.

Mark Drakeford Julie Morgan
Mark Drakeford Julie Morgan

The most significant growth of Shared Lives care in Wales has been in short breaks and respite to help older people and those with dementia manage better in the community. In South East Wales Shared Lives there’s been a 32% growth  in support for people over 50 since 2017/18, and a 42% growth in support for people over 65 years of age. If all schemes increased support for older people in line with the rise achieved by South East Wales over 100 more older people would be supported.

Read our State of the Nation Report in Welsh here and English here.