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Thursday, 08 September 2016 11:27

Sharing lives and living with a learning disability

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Hello everyone and welcome to our latest “Scaling up Shared Lives in Healthcare” blog. This week we’re celebrating the work that our Shared Lives carers do in helping people with learning disabilities have the highest quality of life possible. As you may know Shared Lives Plus has recently received a £1.75 million pound grant from NHS England. This is to help CCGs (Clinical Commissioning Groups) and NHS Trusts in England to offer Shared Lives locally as an alternative approach to traditional healthcare for people.

Since our last update, Fiona Clark, (the NHS Programme Director) and Jenni Kirkham, (NHS Programme Officer) have set off on their travels around the country to visit the CCG’s and Shared Lives schemes who are interested in developing Shared Lives services within their communities . They are covering the length and breadth of the country to support the CCGs and schemes to complete the work needed to be eligible for the match funding available from NHS England to develop the scheme.

With care transforming as society and the NHS adjust to circumstances, we believe it is important that people have a choice to live a life that they are happy with, and one which is suitable for every person’s individual needs and aspirations.

James Picture 1

We decided that the best way to show everyone how Shared Lives can have a positive and meaningful impact on a person living with a learning disability, was to let James, who has lived experience, tell you himself.

James says; “I don’t feel like I have a learning disability, but I know that I’ve got one, because of all the support I get now in Shared Lives. Before I came to Shared Lives I was not allowed to do things I could do and always needed staff with me- often doing things I could do myself. “

James has epilepsy and a learning disability. He was diagnosed with epilepsy when he was 6 years old and then until the age of 40 was in specialist care. Firstly at St Elizabeth’s in Hertfordshire, very near his family home and then residential care at the National Centre for Epilepsy in Chalfont, Buckinghamshire.

James feels he did not learn new things before he joined Shared Lives but now he has more freedom to do the things he wants to do.

The Shared Lives model will support people who have needs which make it hard for them to live on their own. This is achieved by matching them with a Shared Lives carer to share their family and lives, receiving care and support in the community. People using Shared Lives may have learning disabilities, dementia, mental health problems or other needs which require long or short term support. It will offer them the opportunity to either live with their matched and approved Shared Lives carer, or visit them regularly for day support or overnight breaks.

James’ Shared Lives carer has had a remarkable impact on his life, helping James become more confident and independent. He now feels confident to go to town and shop, have lunch in his favourite place.

James:   “My life is friendlier, Andy, and others, have helped me make more friends. Andy has helped me to do more things that I can do myself now – cooking, the washing, ironing, walking out with Bronte the dog- normal stuff that everyone does.”laces and meet new friends

James picture 2

When Andy asked James, a few years ago, what he wanted his life to be like, the reply was ‘more friends and a job that I can get paid for’. Since then this is what James and Andy have been working towards.

Andy said: “Now, building up James’ community connections’ and using his skills to feel valued and have purpose are key to a good and happy life. The frequency of epileptic seizures has significantly decreased to the extent that he has not had a seizure for over 18 months. James says he is ‘not bored now’ and that there is’ always something to look forward to and do’. James can get up in the morning, something he just couldn’t do before and his thinking and decision making is vastly improved. However, this has not always been the case.”

A few years ago James epileptic seizures meant that he has spent time in hospitals. Between having seizures and taking his medication, James was prevented from doing much in the past and feels he was almost forgotten.

In December 2012 epileptic seizures clustered and in the next two months James had 12 hospital admissions for varying lengths of time.  All local hospitals and one in North London tried totreat James.  Each time more medication was prescribed that had significant impact on James without decreasing the seizures.  James was put in an induced coma and spent 3 weeks in Critical Care.

James and ANDY 1

He was prevented from doing much in the past and feels he was almost forgotten. We decided to ask him, if he thought that people in hospital waiting for a place to provide them with care, could benefit from Shared Lives?

Being a part of a Shared Lives arrangement provides people with a family environment, independence and allows people to live the life they want. James, with the help of Andy’s support has become a part of the community, volunteering at the local Country Market every week which he loves. He has also has just started a self- funded training post in a local shop that could lead to a job in a large supermarket.James said: “Yes, they could.” He says that when he came out of hospital, after many visits because of epilepsy, he was supported by people he knew and who knew him really well. He was in a place he felt safe and comfortable and this helped him get better. He believes other people would feel the same.

James and Andy picture 2James’ life has completely changed for the better. He gives a training session to new carers about epilepsy once a month, has helped lead a workshop on Community Connecting at the Shared Lives Plus conference and is part of a team that supports health checks for Shared Lives schemes.

He presents his story, ‘Two Men and a Dog’ about how Shared Lives has changed his life, to various audiences. James is also a Co- Director, with Andy and one other, of a registered Community Interest Company, called ‘Local Social’ that aims to support socially isolated people connect with their community. Andy works with James on all these activities that use James’ knowledge and skills to develop a confident and fulfilling life.

Read 485 times Last modified on Thursday, 15 September 2016 13:28

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