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Can anyone advise on care for Duchenne Muscular Dystrophy - Carers UK Forum

Can anyone advise on care for Duchenne Muscular Dystrophy

For issues related to specific conditions and disabilities.
Hi

I am the legal carer of my nine year old grandson who has Duchenne Muscular Dystrophy. We live in Scotland and I really despair of the care (or rather lack of it) that is available to us. We have an appointment with the consultant paediatrician tomorrow and I am seriously beginning to hate these appointments - all that happens is he gets weighed, measured, occasionally some bloods are taken and he is asked to walk along the corridor.
We are never informed of any new treatments, medications or research and I often feel that I have learned far more through my own research than I have from any of these appointments. Not sure if it's because I'm his nan, but I get 'quizzed' on absolutely everything, from my work situation to where we go on holiday, and, when I raise any concerns about his condition, I don't feel I'm being listened to an d I feel quite intimidated sometimes at these appointments.
I have requested that a support worker from my local carers association accompany me to a meeting with the consultant without my grandson's presence so that I can discuss some of these issues, but I just wondered whether anyone else had had a similar experience, or perhaps a better one, as it may be that I will have to try to change consultant, if possible, to ensure my grandson gets the best care possible.
Any assistance or advice would be greatly appreciated.
I don't have any specific experience of DMD - Eun can probably help best there, especially as she's also in Scotland.

Grandparent carers do sometimes seem to face extra barriers though.
Hi Caring 42. I have DMD myself (manifesting carrier) and am mum to a 27 year old son who has DMD. I see that nothing has really changed over the years then from when my son was diagnosed in 1991. His consultant at that time was a Doctor Robert McWilliam and his geneticist was Douglas Wilcox. Do you know that in some parts of England DMD boys live 7 years longer than they do up here because they get better care. My son is the chair of the Young Adult Council for the Children's Hospice Association and has been fighting for years to try and improve things because it gets worse I am afraid once they reach 18. No physio, he sees a neurologist (Richard Petty) once a year (consists of how are you - fine - great, any problems contact me - what for one asks because they don't do anything). The important visits in my sons case are to Cardiology (Dr Wilson) for his yearly scan and ECG (we both get that done at the same time as it saves two hospital visits) and respiratory care - they are very good in the West of Scotland. Robert had spinal fusion surgery at the age of 13 which has really helped his breathing. We decided against the steriods when he was younger as the side effects were horrendous in our opinion. You do have to do most of the research yourself I'm afraid. My cousin (a nurse in Australia) sent me a huge pile of stuff on steriods at the time (around 1995). Don't think that everything is all bad though. Rob is a 2:1 Honours graduate in Computer Games Technology - he graduated 4 years ago from Paisley University. He also won a gold medal for the first Scottish Powered Wheelchair Football League. He likes to go to gigs, the cinema and clubbing. He went out with a girl for about 2 years (they have decided to remain just friends now). If there is anything you feel you want to ask me please don't hesitate. I am not an expert but I am a person who has DMD and mother of a son with DMD so I've got the lived experience.

Eun