learning disabilities research: our experiences thomas remnant rory bray-harper judith bray harper...

Learning Disabilities Research:

Our experiences

Thomas RemnantRory Bray-harper

Judith Bray HarperSarah Whitwham

Research Showcase22nd October

Eden Project, Cornwall

Thomas

I’ve been a part of 2 big research projects.

I worked with Sarah to find the best memory tests to use with people with Down’s syndrome.

People from all over the world did it too.

We met 4 times during 2014.

I helped Sarah try out lots of different tests.

Some were on a computer.

I’m a part of a project right now.

It’s testing a new medication to see if it makes skills better in people with Down’s syndrome.

I’m working with a big research team from Cornwall Foundation Trust.

SARAH TO INSERT PHOTO OF TEAM

Things I find difficult about the research:

It can take a long time which can be tiring, but we take lots of breaks.

There are lots of rules! I wasn’t allowed coffee!!

Why I do research:

In the past, people with Learning Disabilities have not been treated well.

Research has helped to find out more about people’s needs.

This has helped people to be treated better and fairly.

• Research helps us to learn.

• Learning about people with Down’s syndrome today will help people with Down’s syndrome in the future.

• I do research to help this happen!

I’ve done 3 big research projects:

1 in London

2 in Cornwall

Rory

In all projects, we do lots of different activities…

Both studies are to help test new medications for people with Down’s syndrome.

We hope the drugs will make memory and learning better.

The London & Cornwall studies

In London, I had an MRI scan…..

When I went in the scanner it felt just like the film “The Golden Compass”.

• I need to have blood tests sometimes which can be scary, but I am brave!

• They ask me lots of questions, some of them are a bit weird.

Some things I did not like about the research projects….

Things I liked about the research projects…

•The activities are fun

• I like taking part

•I liked the people helping with the projects

We think research is important.

Please help more people with learning disabilities get involved in research.

Supporting Learning Disability Research

A carer’s perspective

• Dementia is a debilitating disease

• I was aware of the risk of early on-set dementia in people with Downs Syndrome

• I knew Rory had a life-long challenge because of attitudes within society

• I was keen to accept the invitation from the team to get involved

In a small part of the Cornwall, Rory and I

are involved in developing world-health news! WOW! !

I had to make the decision for Rory

•Rory enjoyed meeting the professionals who treated him well and took great care to make him feel relaxed•The many consent forms baffled me but I trusted the Ethics Committee enough to sign them!•As the study progressed, the teamwork effort assured me of any doubts. •We enjoyed the free lunches!

Personal Observations over the months

•Rory remembered to take his tablets and texted me so I had a record for the diary. This helped me a lot! We managed not to lose or forget the tablets, thanks to Rory’s memory!•He seemed to develop a calm, compliant, rational, participatory mood. He seemed happier than I’d seen him for a while, he was bright and “on the ball”. I have started wondering if this new drug can treat Learning Disability! • The study was mainly conducted from Rory’s home environment – less ‘clinical/medical’. Everyday life continued as usual which gave me the opportunity to notice subtle changes.

Room for Improvement •The questionnaires were targeted at children, I guessed non-disabled, who lived at home. Rory is a 22 year-old, adult, living on his own. He has a learning disability. I found it tricky to know how to answer for his “normal” adult young male side and for his “normal” behaviour as someone with a learning disability.•Did I answer the questions properly? •You cannot get a proper answer from someone who doesn’t understand the question! •I think it is vital that we all learn to communicate effectively with people who have learning disabilites.

Carer’s Conclusion

Personal assistance is not free and arguments over who pays, either health or social care, do not help the carer. I think there should be finance for this need within the budget to include personal care. Expenses should not be so tight when we are giving so much for nothing and we are not getting paid! This is one giant step from all those doubts I had at Rory’s birth. Rory and Tom are the astronauts, stepping out into the unknown future for the benefit of others. I have seen many scientific breakthroughs that have given families hope. Rory and Tom were chosen as likely candidates because of their genetic make-up, not despite it. They are heroes and more!

Thank you Rory and Tom.

Learning Disability Research

A clinician’s perspective

Issues to consider…..

Meaningful information for service users and carers.

What’s in it for people with Down’s syndrome?

As a Clinical Psychologist, we are trained to conduct research – its an important skill that can be lost without practice.

I have always made sure research and audit is a recognised core part of my working practice.

We have a responsibility to help develop the evidence-base in learning disability work.

Research helps us learn and improves clinical practice and the benefits we can offer to our clients and their families.

It can help to income generate, which can allow us as busy clinicians to employ people to help us with our research work.

Why do I do research?

1. Meaningful and accessible information

• Mental Capacity Act (2005) guides on research alongside people with/without capacity.

• Mental Capacity and Informed Consent are critical considerations.

• There is a need for information to be presented to clients and carers in a clear and helpful way.

• UK MENCAP easy-read guidelines “Making Myself Clear”.

‘Easy-read’ information

Appropriate to intellectual ability and age of participant.

A range of information sheets for the same project? (Especially if the inclusion criteria ranges from children to adults).

Is it respectfully presented? Information that inadvertently confuses or insults may alienate potential participants - This is equally so of carers!

Being creative!

Consideration of multi-media methods to support ‘information sheets’ Audio-format information – good for non-readers or

those with visual impairment. DVD-based information – more engaging/’human’?

Can be repeatedly replayed. Embracing technology frequently used by our

clients today (Apps/YouTube/social media etc).

Do potential participants lack capacity, or are we failing to inform in the most helpful way?

Embracing individual methods of communication (e.g ‘talking mats’/signing/assistive technologies).

2. What’s in it for people with Learning Disabilities?

Research can be time-consuming, tiring and sometimes anxiety-provoking and painful!

No real incentive (apart from reimbursement of travel expenses) can be a barrier to recruitment.

If the participants involved don’t care about incentives, their carers probably will!

A barrier to recruitment...

We often rely hugely on carers/family to facilitate engagement or be a part of the project themselves.

Many participants with DS live independently and need to pay their carer to help attend sessions.

There are (often) no financial rewards for engaging in research projects. Participants may need to pay for support worker time.

Any Questions?