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Mother of child with Duchenne muscular dystrophy says there's lack of mental health support

A mum whose son has Duchenne muscular dystrophy has spoken out about the lack of mental health support, as a report is published saying immediate action must be taken to improve access.

Duchenne muscular dystrophy causes muscles to weaken and waste over time, leading to increasingly severe disability.

Some conditions affect the heart muscle and vital breathing muscles too, cutting lives short.

Sebastian Deeble (5587042)
Sebastian Deeble (5587042)

Lizzie Deeble, from Bassingham, was 34 weeks pregnant when her son Sebastian was diagnosed, aged two, with the condition.

The family were told of Sebastian’s probable diagnosis over the phone by a paediatrician, who offered an appointment in a week later.

There was no other support.

Sebastian eventually underwent genetic testing and had a muscle biopsy which confirmed he had Duchenne muscular dystrophy. Tests showed that Sebastian’s brother, Toby, who was six-weeks-old by this stage, was unaffected.

During this time, Lizzie and her husband, James, were not offered any psychological support.

Lizzie feels she would have benefited from counselling, but was not offered any despite asking a number of times if any services were available.

Her GP felt the cognitive behavioural therapy offered on the NHS would not be helpful, and Lizzie was advised to look for a private counsellor.

She has had eight sessions so far, at a cost of £40 per session.

Lizzie also feels psychological support would have helped her and James work out how to help each other.

She believes specialist support should be available for siblings and those who have the condition, to help them deal with the implications.

She said: “Duchenne muscular dystrophy is a very lonely diagnosis and parents should be offered mental health support from the very offset and later down the line if they are struggling. But not only is it not offered, it’s very difficult to access.

This needs to change.

“When Sebastian was diagnosed, I had so many feelings of shock, grief and loss, and it would have made a huge difference to feel that someone could help me navigate that.

"As a family, we felt very alone. A diagnosis like Duchenne muscular dystrophy changes everything and I feel it is important the impact of that on our lives is understood and supported.”

An inquiry by the All Party Parliamentary Group for Muscular Dystrophy heard emotive testimonies from adults with neuromuscular conditions, as well as parents of children with life-limited conditions, providing stark evidence of the lack of psychological support for them and family members.

It also heard that lack of support forces many people to seek out expensive, private help.

Catherine Woodhead, chief executive of Muscular Dystrophy UK, said: “Our Mental Health Matters campaign aims to educate psychologists and health professionals about the crucial need for psychological support for people with neuromuscular conditions.

“This reports shows how imperative it is to press for better psychological care for the devastating impact that muscle-wasting conditions can have on all family members ­— parents, siblings, children and grandparents.

“We want to ensure that changes come into effect. There are areas for improvement that we have identified which need not be too costly. Mental health is supposed to have parity of esteem with physical health, yet improvements have been far too slow.”

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