Stepping into my own power

My colleague Meg Lewis is one of our Ambassadors, who has blogged about her experiences, interviewed NHS chief, Simon Stevens, speaks to national audiences (for instance, we are doing a double act on safeguarding for the DBS on March 12th), and contributes to our planning and thinking about improving the model. Meg and Nick Gordon from our communications team worked on this film, in which Meg reflects on her journey from hospital ward to shared lives, and now into her own place, which she shares with her dog, Flower. Meg went back to the psychiatric hospital where she lived for four years and talked with the clinicians about her journey: “I knew that I needed to feel a part of something and move away from clinical, boundaried care. Because those people do care, but when they go home they have to switch you off.” It’s a powerful and moving story about hope and, as Meg puts it, how to “step into your own power and change the course of your life.” Enjoy!

Hero, villain, angel, machine

The other week I broke a bicep tendon, which I wouldn’t recommend. I posted this twitter thread with some reflections about using the NHS.

I had quite a few responses, so I’m reposting it as a blog here:

As an NHS Assembly member I thought I should road-test the NHS. So last weekend I snapped my bicep tendon while rock climbing training. Ouch. Here are some reflections.

Firstly, this was a self-inflicted sports injury, but can only be fixed by surgery. That the risks we choose to take (exercise, lack of it, etc) are covered, free-at-point-of-use seems miraculous at times like this.

A&E on a Sunday at Leeds LGI hospital. A wait of course, but in under 4 hours, I was assessed, x-rayed, seen by a specialist, booked me in for next week, by busy, effective, kind people.

I was phoned on the Sun and Mon to book and confirm a Tuesday appointment. The surgeon and his team there were friendly & clear. Options & risks explained. Surgery booked for Sun.

One of the great things about our NHS is the sense of equality. The surgical ward’s patients were a cross-section of Leeds. An unconscious homeless man brought in by 2 police. An older lady keen to chat. A young man having to wait ‘too long’ left in a huff (or maybe in fear?)

An unconscious homeless man was brought in by two police officers. An older lady fretted about getting home. A young man left in a huff when told how long his surgery would be.

Being trolley-ed half-dressed to theatre, scalpels & general anaesthetic feels like being wheeled away from the land of the living. Porters have a degree in cheerfulness which helps a lot.

I met the surgeon just before being anaesthetised. Ideally, I’d have had some significant last minute risk info earlier. He did what seems to be a great job of the op.

Waking up. I burble at the endlessly patient nurse & spill my water. Back to the ward. More kindness + a chemically-enhanced sense of wellbeing. I love the NHS!

This album on my phone seems to have lasted a month.

All morning on the ward TV politicians shouted about Brexit, immigration & NHS crisis. While the multi-cultural, multi-national team were busy, effective, cheerful & kind to us all.

I hear a passionate discussion about an issue to do with unnecessary waiting, and what the team planned to do to fix it. A strong sense of us patients as people with lives outside of this ward.

I think about someone I know in a mental health crisis & my experience of those services: overwhelmed with demand. Long-term care lost behind waiting lists & ‘life-or-death’ criteria.

With my ‘self-inflicted’ injury fixed, I thought about my colleague Meg who talks about being treated for self-harm injuries with less compassion: results of a mental illness seen as ‘self-inflicted’

Is the balance right between the impressive resources here & those available to people with life-long conditions? This team is under pressure, but imagine social care resourced like this…

Later I read this harrowing BBC report into Mark Stuart’s death: autistic & fatally lost in a hospital’s care system. His parents said, “It was like he didn’t matter”.

The NHS is a miracle which has not yet reached all those who need long-term care. It is easy to simplify the NHS to hero, villain, angel, or machine, based on our latest experience.

The NHS needs us not to worship it, or despair at its faults, but to see it clearly, value it and question it. The staff here were at their best when they listened, explained, empathised.

In some places, that culture of kindness and professionalism will break if we take the NHS for granted. We need to invest in it. & we need to listen to those who don’t yet experience it.

The bill for all this was of course, nothing: just paying my taxes. I dread to think how much my care has cost the NHS, or how much private paying health care systems would charge.

Finally, huge thanks to everyone at the Leeds General Infirmary – you are doing an amazing job in tough circumstances and I couldn’t be more grateful.

Where human rights begin

One of my favourite quotes is Eleanor Roosevelt’s comment about where human rights begin: “in small places, close to home”. It would easy to hear the humility in that, and miss the ambition carried by that humility: our rights to be human, not as an abstract principle to be debated by philosophers or politicians, but to be lived, by all of us, all of the time. When we go home, all of us live in those small places.

Roosevelt’s quote reminds me why institutions are so incompatible with human rights: traditionally they are big places, however many homely touches we may add. Even though the buildings may be smaller these days, and have more ‘homely’ touches to alleviate them, services remain places where too many people are let into an individual’s life. Bureaucracies have the same effect: bringing public discussion and impersonal forms into people’s most intimate moments. Meg Lewis, who found a route out of the impersonal space of a mental health ward into the ordinary family home of her Shared Lives carer, talked about the thick file of ‘everything embarrassing I’ve ever done’ which followed her around the hospital, before life became what it should be: “going on adventures and making friends”.

A couple of weeks ago, we saw the corrosive effect that letting strangers into people’s intimate lives can have, as a team of workers at a large service dehumanised and assaulted people with learning disabilities, feeding off their distress for their own amusement. This BBC exposé was almost a carbon copy of one approaching a decade earlier, and of institutions exposed as havens of abuse through decades before that. Every big scandal and big reform programme, with their senior leaders, big budgets, committees and frantic timescales has failed to stop this kind of abuse happening. They have seen a big problem, and tried to impose a sweeping solution, whether it was a service restructure, or new commitment that lots of organisations signed up to, or new regulations. Those programmes have been too huge to pay attention to the small places, close to home.

Meanwhile, Shared Lives carers and their families, like the hundreds who attended Blackpool Shared Lives’s 30th anniversary celebration last week, have been quietly helping people to live good lives, in ordinary family homes, as part of a supportive household. There are 10,000 Shared Lives carers now; there have been many thousands more during our 40 plus year history. It is their willingness to share their homes and personal lives with another individual that has been the success of the model, as people have achieved small things like learning to cook chicken curry, joining a local club, or travelling on the bus independently for the first time. Those small things make a huge difference.

Our challenge during Shared Lives week, which this year has a human rights theme, is to make a big deal out of those small changes. To have huge ambitions for Shared Lives whilst making sure it is offered to thousands more people. To convince the big bureaucracies of local government and the NHS that this human-sized, infinitely variable model is part of the solution to the huge problems facing our crisis-ridden public services. Rachel, a Shared Lives Plus Ambassador who works as part of the team to speak about Shared Lives and to help us improve it, said at the Blackpool event that she is “lots of different things at once”: she is not just someone to be supported through a service. Even a brilliant service will fail her unless she has the right to be a football fan, a brilliant knitter, a charity ambassador, a cook.

We need now more than ever to believe in the value of getting the small things right. Getting the small things wrong always means we get the big things wrong and ultimately it will thwart every ambition we have as individuals and for our public services. We are often asked how we are going to scale up Shared Lives. Shared Lives week is a time when everyone can help us to do that through spreading the word, celebrating your local Shared Lives carers and, for the first time, signing up as a supporter. But just as important as scaling things up is our willingness to scale things down. To think about the small places, where human rights begin.

Equality

Meg Lewis has lived experience of using Shared Lives support and has spoken powerfully at events about her experiences of different kinds of mental health services. I love this guest blog that she has kindly written, which reminds me that the big issues like equality, start in ‘small places, close to home‘. Meg writes: 

In the many, lovely Shared Lives stories that we hear, the same thing jumps out at me: people being treated as equal. Not making assumptions about people based on their disability. Equality.

Damn right.

But you know what? People don’t always work that way, even people who live in Shared Lives.

There’s a Shared Lives party at a local club. Being someone who doesn’t go out to social events often and being extremely self conscious, I have butterflies in my belly and it takes me 3 hours to get ready and choose an outfit and finally decide on the first one I tried on. I forcefully tell myself I look “fine” and manage to get out of the house and arrive at the party.

I like a beer so I head straight to the bar, exchanging smiles with anyone I accidentally make eye contact with. I’m a bit hot and flustered but, now, with a beer in my hand and spotting my carers at a nearby table, I chill a little and head over to sit with them. Those familiar faces and easy chit-chat ease me more.

It’s getting rowdy on the dance floor. Karen, a lady with down syndrome, is looking sassy and showing us her ‘twerk’ and Joshua (he has autism and a non-mobile hand) is raising the roof with his beat boxing and throwing some shapes. I’m feeling settled now and want to get in on this fun! So I pick up my drink and joking them on the dance floor. We danced our socks off when Proud Mary came on! Buzzing! I go out for a cig to cool down and that’s pretty much how the next hour and a half went. Drinking, dancing, smoking outside for a cool down. But after a while I started noticing the disapproving looks, eyes rolling, a “tut”at the bar. My mind starts racing at 100mph…”No one likes me”, “I must look stupid”, “I’m ugly”, “What have I done? “, “Everyone hates me”…..”I hate me”.

I sit at the table and play with the beer mats, no more dancing, and I wait until I can go home.

For the next few days I’m plagued with thoughts of not being good enough which has now triggered that familiar feeling of self hatred.

Then I find out what the issue was Continue reading

Beginnings and endings

At our annual conference, our Chair Richard Jones and I always hold a discussion session with Shared Lives carers and others, which is an opportunity for people to make sure we have the issues which matter most at the front line on our radar. Here are some of the issues which came up: they give a sense of why Shared Lives is valuable, what makes it unique as a way of supporting adults, and also some of the challenges and the ways in which we do not always value and back up Shared Lives households in the ways we should.

We heard from a Shared Lives carer who supports people with significant mental health problems. The people living with her could easily be living in medical institutions without her support and doubtless her care saves the NHS a fortune. During a late night crisis, she shared the poor response she had received from the local mental health crisis team. I won’t share the details, but the theme was a frustratingly common one: the value of Shared Lives comes from the fact that it occupies a hard to define space somewhere between ordinary family life and a service, at its best, taking the best of both worlds. But too often, the rest of a service system sees someone settled in Shared Lives, breathes a sigh of relief, and disappears. Good Shared Lives schemes offer well-planned out of hours support, but sometimes the response needed in an emergency needs to come from another part of the system, and these teams are not always even aware that Shared Lives exists. We believe that Shared Lives carers should be seen as partners by health and care professionals, with emergency plans in place to ensure that they can get an effective response. This is essential to make Shared Lives fair, safe and sustainable for everyone involved.

We also talked about endings. Shared Lives arrangements can come to an end for all kinds of reasons: the person may have achieved their goal of getting their own place, or their circumstances may change. Things may change unexpectedly in the Shared Lives carer’s household. People live together for decades, sometimes until one of them dies. There is no set retirement age and I meet Shared Lives carers who are now in their 80s. Sometimes, an individual who has lived for many years with a Shared Lives carer who is now ready to retire moves in with their original Shared Lives carer’s adult daughter or son, whom they may have known all their lives. But complete continuity of that kind is not always possible. The Shared Lives carers we heard from felt that the difficult topic of endings is one we need to talk about more.

Endings can sometimes be enforced by social workers who assume that the individual’s goal should be to move into independence. Sometimes this is right, but at others, we see people who were happy in a household they have come to regard as their family home being obliged to live by themselves, sometimes unhappily or worse. Not many of us dream of living alone, so we should be cautious about assuming that is always the right thing for someone with a learning disability or another support need and we should listen to their wishes and goals, without making assumptions about concepts like dependency, which we may not be so quick to apply to our own lives.

At other times, the inevitability of an ending is ignored until it is too late to plan effectively for it. Some Shared Lives carers say that they feel guilty about the idea of ending, even though they are ready to end their active caring role and perhaps need to for health reasons. We have more work to do in this area: ensuring that people living in Shared Lives households feel supported to talk about choices, including endings, and can plan for the changes they dream of as well as the endings they wish will never happen.

The right support at the right time

This is a guest blog from my colleague Ali Hall who works in our development team building new support for young people in transition to adulthood:

As 2017 draws to a close, I’m three months into my new role with Shared Lives Plus, helping local services develop Shared Lives for young people in transition. It’s been an enriching experience – a bit like walking in to a room full of people who think the same way I do, and quietly realising “So this is where you all are”.

The Care Quality Commission (CQC) recently published a report on mental health services for children and young people which says “The system as a whole is complex and fragmented. Mental health care is funded, commissioned and provided by many different organisations that do not always work together in a joined-up way. As a result, too many children and young people have a poor experience of care and some are unable to access timely and appropriate support.”

This fairly accurately sums up my experience of working with and within health, community and youth services. I’ve found that even where practitioners, including myself, can identify possible mental health concerns for young people, we may not know enough, we may not want to assume, or we may not have the time or the knowledge to adequately help. As CQC say this means we “may not be able to help children and young people access the right support at the right time.”

So, the big question is: who can? This is traditionally where family and close networks come in. But what about those people who haven’t got this kind of framework in place? This is exactly the kind of scenario where community cohesion, common sense and having a go-to person can provide a bridge to services.  It’s also where invested adults with an overview and understanding of that young person can help navigate the system and secure the support they need. Perhaps just as crucial, though, is applying these principles to prevention and recovery for people who have mental health issues of all kinds.

Shared Lives is one of these common-sense approaches.  It’s a model of care where adults and young people aged 16+ who need support and/or accommodation move in with or regularly visit an approved Shared Lives carer, once they have been matched for compatibility. Together, they share family and community life.

People make friends, get involved in clubs and activities, volunteer for causes and go on holidays. Feeling settled, valued and developing a new sense of belonging improve young people’s mental health – those intangible senses we have of being connected to others, of Continue reading

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.”