Muscular Dystrophy UK have said that patients are being left feeling depressed and suicidal as many are given their diagnosis over the phone or by post with little advice.
The charity Muscular Dystrophy UK has said that people with muscular dystrophy are being driven to depression and suicidal thoughts following lack of support from the NHS, reports the Guardian.
700 people with muscular dystrophy were surveyed by the charity and findings revealed that over half had experienced feelings of depression and a fifth had suicidal thoughts and one in four were forced to wait over there years for their diagnosis after raising first concerns with a health professional.
The charity’s chief executive, Robert Meadowcroft, said: “The evidence is clear. Too many families have been left abandoned and alone to cope with what can be a bombshell at diagnosis.
“This void of emotional support is having a detrimental impact on people’s lives, their mental health and in the worst cases, we’ve even heard from people who have had thoughts of taking their own life. The NHS must do better in prioritising emotional support for people affected by rare conditions, as a matter of urgency.”
16% of survey respondents had not been given their diagnosis face to face with 9% receiving it via post and 7% through the phone.
Paul Jaworski, from Southwell, Nottinghamshire, said that when his three-year-old daughter Iris was diagnosed with merosin deficient muscular dystrophy in 2012, they were advised to “Google it”.
He added: “That was the end of the consultation. We were left crying in the corridor of the hospital with no idea of what it all meant or what might happen next. There needs to be more emotional support for newly-diagnosed families.”
Muscular Dystrophy UK says that newly diagnosed families and individuals should be signposted to the charity, so that they can get the support they need. It also wants to see a joined up approach between the government’s rare disease strategy and the mental health and suicide strategies “to make sure that no individual or family living with life-limiting, rare and progressive condition falls through the emotional safety net”.
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