Sharing lives, improving lives

In the latest of a series of blogs on the work being done to transform care for people with a learning disability and/or autism we hear from Fiona Clark, NHS Programme Director for Shared Lives Plus who tells us how the recent partnership with NHS England is having a positive and meaningful impact on people’s lives.

Shared Lives Plus recently received a £1.75 million pound grant from NHS England to help clinical commissioning groups (CCGs) and NHS trusts in England to offer Shared Lives locally as an alternative approach to traditional healthcare for people.

Fiona and colleague Jenni Kirkham (NHS Programme Officer) have been on their travels around the country to visit those CCGs and Shared Lives schemes who are interested in developing local services to support them to complete the work needed to be eligible for the match funding available from NHS England to develop the scheme.

To demonstrate the positive and meaningful impact Shared Lives can have on a person with a learning disability and/or autism Fiona met James who told his story.

“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 six 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 a learning disability, dementia, mental health problem or other needs which need 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 places and meet new friends

“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, washing, ironing, walking out with Bronte the dog – normal stuff that everyone does.”

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 more than 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 had to spend 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 James’ epileptic seizures got much worse and in the next two months he had 12 hospital admissions for varying lengths of time.  All local hospitals and one in North London tried to treat James.  Each time more medication was prescribed that had a significant impact on James without decreasing the seizures.  James was put in an induced coma and spent three weeks in critical care.

Fiona asked him if he thought that people in hospital waiting for a place to provide them with care, could benefit from Shared Lives.

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.

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’ 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 person, 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.

Fiona Clark

Fiona Clark has worked in and around the NHS from ward to Board for more than 30 years, first qualifying as a registered general nurse and midwife and currently sitting on the Board of Cheshire and Wirral Partnership NHS Foundation Trust as a non-executive director, a position she has held for 13 years.

She has worked extensively in the voluntary sector developing services and managing projects in healthcare related charities locally, nationally and internationally. Fiona is currently the NHS Programme Director leading the development of Scaling up Shared Lives in Health programme funded by NHS England.

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  1. jean spain says:

    A great idea but not all those with Autism(or Asperger’s to be specific)are given ANY support at all other that to be there if a request is made. We have a beloved grandson with the condition who has been completely ‘taken in’ by a same sex partner, most of his money is now controlled by him as is his life. As he is over 20 there seems to be nothing we as a family can do to help and he sees nothing wrong in this, clearly besotted with his partener. We have to stand by and watch the savings we as an extended family have put by for him throughout his life, erroded for the gratification of someone else and he sees nothing wrong. We know that when all THE MONEY HAS DRIED UP HE WILL BE DROPPED LIKE A STONE and having been persuaded to quit uni a week before his 2nd year exams,has also accrued two years of debt and to repay an overdraft he was also persuaded to take advantage of. How sad that this is allowed to happen as he is not deemed to have a vulnerable person status.