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.

“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.

Vernon

My colleague Babs Lewis, who leads our work in Wales, writes:

Vernon, who will soon be celebrating his 73rd birthday, lives an active life in the community with support from Margaret and her partner Eddie, with whom he’s lived for 16 years. He works in his local supermarket for a few hours a week, and gets out and about regularly thanks to his free bus pass. Vernon was taken into care aged just two and was looked after by Nuns in Swansea until the late 1990s, when he moved to a residential home. The move didn’t suit him at all and he didn’t thrive there, so Swansea social services suggested Shared Lives.

Vernon met Welsh Assembly Shadow Social Service Spokesperson, Suzy Davies, over coffee and told her all about Shared Lives and what the service meant to him. They also shared reminiscences of their shared home town and talked about all the changes they’ve seen over the years in Swansea.

Margaret along with her partner Eddie have been Shared Lives carers for around 18 years now, supporting Vernon since 2001.  Margaret had worked as an Auxiliary Nurse before moving to Swansea and becoming a Shared Lives carer.  Along with Vernon, she’s also provided long-term support and short-breaks to other people who need just a little help to stay independent and active. The visit was organised as part of Wales Shared Lives Development Team’s work connecting Shared Lives carers and the people they support to local politicians. The aim is to make sure politicians see first-hand the great work Shared Lives is doing in their constituency.

An equal in my home

Catherine, who lives with her Shared Lives carer Liz in Wales, told her moving story at our recent event at the Wales Government in Cardiff, hosted by Julie Morgan who is AM for Cardiff North and joined by Rebecca Evans, the Minister for Social Services and Public Health. The event launched the work of my colleagues Babs and Lois who are developing Shared Lives in Wales for older people and as a health service, amongst other exciting work. Catherine told us first about the mother and baby service which she experienced as a new Mum aged 18 and then the support she received through Shared Lives via the Gwynedd Adult Placement scheme.

My OLD life

catherine-watchorn

My name is Catherine and I am 27 years old. I am here to tell you how my life has changed over the past 9 years…

The story starts when I was in a mother and baby placement when I was 18 years old.

The plan was that the placement would support me to learn new skills to enable me to live independently and be better equipped to look after my Son.

THIS DID NOT HAPPEN. The Family that I was living with made me feel that I was not a good mother, nor was I able to take care of myself. They used to write things about me every day but did not tell me what they were writing. I lost all my confidence I also lost a lot of Weight. I went down to six stones while I was living there. I was not supported to use the washing machine, tumble dryer, learn to cook; they didn’t take me shopping so when I went to the shops I would just waste my money. I asked for help, they told me that they are not there to help me they are there to report back to social services about how I was doing.  I felt so low that I didn’t take any pride in myself. I was also suffering from Depression. I had an appointee looking after my money so I didn’t know how much money I had. I felt that they had taken over my life. I was told that I didn’t need an advocate so I didn’t have anyone to support me at this very difficult time in my life. I was not treated as part of the family.

I felt that they saw the learning disability and not the person that just needed a little help.

I feel that the lack of support I received contributed to my son being taken away from me and adopted.

When it was time for me to move on I was asked if I wanted to go to an adult placement. I was a bit worried that it would be just the same, as I didn’t know what an adult placement would be like.

My NEW life

When I first came to live in an adult placement I didn’t know how to take care of myself. I had no friends. I didn’t have a job. Liz sat down with me and we made a plan together. Liz asked me what things I would like her to help me with. This made me feel happy as I felt that someone was asking me what I wanted.  We made a wish list. Liz supported me to learn how to do things. I took control of my money so no longer needed an appointee, I just need some support from Liz now. I learnt how Continue reading

Sharing, compromise and risk

We have a new and very active email group for Shared Lives workers and an issue which has been the subject of some discussion recently is what happens when Shared Lives carers have visitors, or even other lodgers. Some schemes are nervous about the idea of adults (in some instances, grown-up children, but in other cases, strangers such as foreign students) coming to stay in the long term. Workers have been wondering about what happens if the Shared Lives carer has conflicting demands on their time and attention. Continue reading

West Wales launches social enterprise

Last week I visited Adult Placement (AKA Shared Lives) in West Wales, where I had the honour of (virtually) opening http://westwaps.org.uk Cutting the virtual ribbon turned out to be a slight technical (and perhaps existential) challenge, but the site is now up and running and is a great model for other Shared Lives schemes who want to put their Shared Lives carers in real control. WestWAPS.org.uk has been set up as an independent social enterprise, with support from the council-run West Wales Adult Placement Scheme and
Carmarthenshire Adult Placement Service and aims to provide information, a place to share learning and in time, a training service. It is being established at the same time as a democratically elected consultation forum for the area. Continue reading