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  • Writer's pictureThe Advocacy People

Speaking out for what matters

It’s Learning Disability Week, but advocating for the rights and needs of learning disabled people is something that goes on year round.

At a time when life expectancy among the LD population is still lower than for other adults, it's imperative that barriers are removed and that everyone has access to healthcare information, preventative care and treatment.

Where does advocacy come in?

Advocacy empowers people with the skills and confidence to speak up and represent themselves, and acts to represent people’s needs and wishes where this is not possible.

Advocacy is there to make sure information is shared effectively both ways between people and the services and authorities there to support them. Its aim is that learning disabled people set the agenda on what’s most important to them in health and social care, as well as other issues that matter, in the places where they live.

In Berkshire The Advocacy People support the running of four self-advocacy groups: Be Heard (Bracknell Forest), Speaking Out (Royal Borough of Windsor and Maidenhead), Hear Our Voice (for students at Manor Green School) and the People Power group, a sub-group to the Bracknell Forest Learning Disability Partnership Board.

In Southampton, we facilitate the Busy People group, and our partners ERYA

run monthly Peer Support Groups in West Cornwall, and hope to set up more in other parts of the county.

The Speaking Out group meets every month in Maidenhead and members attend the local authority Learning Disability Partnership Board meetings every two months.

The fundamental purpose of a Learning Disability Partnership Board is to allow a platform for people with learning disabilities to say what is going badly or well in health and social care, and to have a meaningful input into new services and policy.

Members of the Speaking Out group feel rightly proud of the work they do to represent themselves and others. They said:

“When people tell us about the changes we are helping to make,

I know we are making a difference”.

“Our group helps others to have a better understanding of learning disability and how to engage and support those with a learning disability”.

In Berkshire West, The Advocacy People are part of a three-year Learning Disability Health and Wellbeing project that is now just over two years in. Priorities for year two continue to be the uptake of Annual Health Checks, Health Action Plans and Screening, where we see a low uptake compared to the non-disabled population.

Alex and Sue work closely together on the project, and alongside other organisations in the area on initiatives to directly improve the health and wellbeing of adults with learning disabilities, their parent/family carers and others supporting them.

A Learning Disability Partners group was formed, bringing together key learning disability representatives across Berkshire West, among these the LD Health and Wellbeing project as well as our own West Berkshire Learning Disability Partnership Board. Healthwatch are also represented on this group.

The group meets once a month and shares information really well, says Sue, so that the best collaborative outcomes can be achieved.

One of the success stories of the project so far is an uptake in the Annual Health Checks (AHC) which every learning disabled adult and young adult is entitled to from the age of 14, and which every GP practice should be offering.

“The national LeDeR report showed that people with Learning Disabilities die a significant number of years earlier than their counterparts,” explained Sue, who’s lead for the Health and Wellbeing Project.

“The annual health check is a top-to-toe check with a person’s GP or healthcare professional with the aim of trying to catch anything going wrong early.

“A big part of the early work in our project was around the annual health check – establishing what a good AHC looks like, are people attending them, and if not, what are the barriers?

“As well as GPs making reasonable adjustments for people, which we’ve done a lot of work around with the practices, one of the big things we found was that people might not have the support they need to actually get to the appointment. We found that if people have a care package, taking someone to their annual health check might not be part of that.”

Working together, the Learning Disability Partners group has seen a significant increase in the numbers of people taking up their annual health check - collective energy has really created results! Among the ways this was achieved was through the trialling of new lesson plans at specialist schools across the whole of Berkshire, and the development of an Easy Read letter which young people will fill in themselves and send to their GP, in order to take more control.

A concerted effort was made to raise awareness at GP surgeries.

“We have an absolutely brilliant lead GP, Dr Heather Howells, she’s so very proactive,” says Sue.

“We work very closely too with CLASP and Reading Mencap.”

Alex, who’s LD Projects Lead in Berkshire, says: “The Annual Health Check improved uptake is a brilliant achievement and is testament to outstanding work and the partnership working of many.”

This year’s focus for the project is National Screening for people with LD.

“It’s screening for things such as breast, bowel and cervical cancer and again looking at the barriers for people,” says Sue.

Sue and Alex promoting the Health and Wellbeing project

at a CLASP event

“So far we’ve been gathering information to get a good picture – are people getting the right information, is it in an accessible format?

“On a wider level, we’re really pleased to be involved in planning by the Buckinghamshire, Oxfordshire and Berkshire (BOB) Integrated Care Board – this will support some of the best practice ideas for LD health being extended across a wider footprint.”

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