Transition to Adulthood for young men with Duchenne Muscular Dystrophy

David Abbott & John Carpenter

Transition to Adulthood

“…an all encompassing process covering every aspect of a young person’s life. Supporting disabled young people [in transition] can be a challenge. This is because the process must be individual to the needs and aspirations of each young person.

It’s a fluid process, over years…options often limited and support patchy…

Compounded by moves to adult services at different ages…school, health, social care. (p.2)

(DH, DCSF (2007) A Transition Guide for All Services)

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No shortage of policy and legislation

• Children Act 1989, 1996 (Transition Reviews), 2004 (Children and Young Person’s Plan).

• Education Act 1996

• Valuing People 2001

• Every Child Matters 2004• NSF for Children, Young People and Maternity

Services 2004• Our Health, Our Care, Our Say 2006

• Aiming High for Disabled Children 2007

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Or structures…

• Children’s Trusts

Arrangements that produce integrated working at all levels from planning through to delivery, with a focus on outcomes.

– Local authority • education, • children’s services• and adults services, PLUS

– District council• housing• leisure

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And these too…

• Youth Offending Team• Strategic Health Authority• Primary Care Trust• Mental Health Trust• Connexions• Learning and Skills Councils• Police• Probation Board

Or people

• Directors of Children’s Services

• Directors of Adult Services

• Social workers• Occupational

therapists• Voluntary

organisations

• SHA and PCT Health ‘leads’

• Medical officers• Consultants• GPs• Children’s community

nurses• Speech and language

therapists• Physiotherapists• Psychologists

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Or guidance…

Adolescent Transition Care: Guidance for nursing staff. (2004)

Lost in Transition (2007) Royal College of Nursing

A Transition Guide for All Services (2007)

Pathways to Success (2006) Council for Disabled Children

The Transition Pathway Guidance and Tools to support person-centred transition planning with young disabled people aged 13 – 25.

http://www.transitionpathway.co.uk/

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Transition is not just…

• …leaving school

• …or transferring from child to adult health services

• …or children’s social services to adult social care

Transition to adulthood: fulfilling your potential:– Further and higher education– Employment– Developing your interests and friendships– Working out your family relationships

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10 NSF Children, Young People and Maternity (2004) says:

Young people… who have complex health needs should receive coordinated, high quality child and family-centered services which are based on assessed needs, which promote social inclusion and, where possible, which enable them and their families to live ordinary lives.

NSF LTNC (2005)

• Quality Requirement 1: A person-centred service

…there is continuity of health and social care services when a person’s needs change or they move between services…For example, the transition of people with childhood onset conditions such as muscular dystrophy or cerebral palsy from children’s to adult services needs detailed care planning. Commissioners and service providers need to ensure appropriate services are in place to meet these people’s continuing needs and to provide support for making life transitions.

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12 Partners in research

13 The Research

NSF Long Term Neurological ConditionsMain question: Health and well being at transition

1. Postal questionnaire to all families (n = 120) with a son with DMD aged 15+ in 3 areas of England: 38 returns – nearly 40% response rate.

2. Interviews with 40 young men and their families: 102 individuals – individually or together.

14 Young men interviewed

• 13 at school

• 10 college

• 2 university

• 16 at home

• 2 minority ethnic group

• Age 15-33

• Avg. age 19 ½

15 After education

Lack of meaningful day time activities and lack of social life/friendship network:

“I go out with my mum for my dinner on a Tuesday. Sometimes I go to bingo. That’s all we can think of doing. We don’t know what else there is out there for us. We want to do more. I don’t just want to go to the pictures all the time or out for my dinner.”

What do they want?

X-box

Friends

Places to go

Things to do

To drive a car

Play football

• Freedom! Do things without

your parents

• Learn – go to Uni

• Get drunk

• Have a girlfriend

• Have sex

17 Young men said

• For the first year it was all right. But … gets boring

then. Only time I go out is when I go to the football

matches, or when I go to respite [care]

• I don’t know, doesn’t feel like it’s enough really. I mean

I keep myself occupied, go out and do things, but … I

don’t feel like I’m helping anyone or … you know what I

mean.

18 Parent’s mixed views

• What annoys me and his Dad is they’ve got so

much potential and so much to give - why waste it?

I mean you wouldn’t would you? But having said

that, we aren’t in his position.

• I think all of us [parents] just think, ‘Well, he’s in the

best place. Make him as comfortable as possible.

He’s in his comfort zone, he’s not going to go

anywhere now.

19 Support and care

• Very different levels and type of support (for similar

needs).

• Most parents very involved in providing care, either

instead or, or in addition to external care.– Independence, privacy

• Quality of external care varied enormously.– Mixed views on direct payments

Seeing the whole person:

“Everybody perceived him as a sick and dying boy and I had to keep saying to people:

No! He’s a burger and chips boy and he’s doing a GCSE in Art - just to get some perspective back to everybody.”

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Charting decline:

“What possible motivation is there for going if you’re just told how much worse you are? Every time we used to get assessed by the physio about how much more he’d deteriorated which is a really negative thing and when we stopped going, to be honest, it was a relief.”

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22 What helps?

1. Continuity of multidisciplinary services – from

children’s to adult services.

2. The systems – when they work.

3. ‘Fighting’ for support.

4. Reliable professionals who stick with you.

5. Recognising that people cope in different ways.

6. Close family relationships.

23 The Future

•Young men thought about it but mostly on their own terms:

“Don’t think about it much – back of me mind really, just get on with things. Sometimes I worry about it but not very often.”

Sometimes comes into sharp focus:

“Generally you try not to think about it but when there have been friends passing away then you talk about it with your friends.

It’s been difficult because when that happens people are upset – upset about it happening but also when someone dies, because they’ve got the same condition as you that makes it harder because you think, well the same thing could happen to me.”

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25 Transition – what are we trying to achieve, how do we do it and is it different for young men with DMD?

• Living for the day while planning for the future – how

do you do it?

“You live for today. It’s not to deny it’s there

but you can’t dwell on the end else you’d be

depressed all the time.”

“You can’t live each day expecting that this will

be your last and there’s no point making any plans.”

Contribution of the NSF

• QR1 A person-centred service

• QR 4, 5 and 6: Rehabilitation, adjustment and

social integration

• QR7: Providing Equipment and Accommodation

• QR 8: Providing Personal care and Support

• QR 9: Palliative Care

• QR 10: Supporting Family and Carers

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27 Further information

Download report from Muscular Dystrophy Campaign www site

www.muscular-dystrophy.org/news/2261_new_guides_for_young_adults_with_muscle_disease

Plus: Becoming a Man. Life with Duchenne Muscular Dystrophy. By

Craig McLean, Liam McLean and David Abbott