Help and advice
Our advocacy team is here to fight for anyone affected by a muscle-wasting condition who is experiencing difficulties accessing the services, benefits or equipment they are entitled to. Since the advocacy service launched in 2011, we've secured approximately £1,679,745 worth of support.
Our advocacy team recently secured a care package worth £28,175 for Susan's son Michael who has Becker muscular dystrophy, after the Health and Social Care Trust had cut his care package. With our support, Susan spoke to the local press, which caught the attention of her local MP who offered his support which helped us highlight Michael's needs and how vital his care package was.
We are willing to look at any case put in front of us, for example, getting an appropriate care package, applying for housing adaptations or access to specialist health care services. The advocacy team also offers free advocacy, support and advice to anyone who is experiencing difficulties with their local services.
We have also published an advocacy pack which provides comprehensive information on the major issues facing people with muscular dystrophy and related conditions including access to Disability Living Allowance, Employment Support Allowance and housing and care packages.
Are you struggling to get the right care package?
After having a tracheotomy operation, Matthew, who has Duchenne muscular dystrophy, found out that the NHS would no longer provide the support for him to continue to live in his own home and that he would have to move 30 miles away to live permanently in a residential care home. Matthew's parents contacted the Advocacy Service who then wrote letters, made many phone calls, sought legal advice and organised local and national coverage- Matthew was even in the Sunday Times and the Chief Executive of the Muscular Dystrophy Campaign spoke on live TV in support of his case.
Thanks to the advocacy service, the NHS reversed their decision and Matthew was able to move home to be with his family for Christmas 2011.
Do you need support in ensuring that you home is appropriate for your needs?
For someone with muscular dystrophy or a related condition, having an appropriate house with the necessary adaptations to meet theirs needs is crucial. Sometimes it is a struggle to get this. Daniella is 17 and has myofibrillar myopathy. The family had been fighting for three years to have an extension put in which would accommodate Daniella and all the equipment needed to manage her condition. The council refused. With support of Emily Ballard, from the Lane Fox Unit, the advocacy team wrote a letter to Kent County Council who subsequently agreed to build the extension.
Are you struggling to get the specialist equipment you require?
While there is no cure for muscle wasting conditions, specialist care and equipment can improve patient's health, in some cases extend life expectancy and improve quality of life. This equipment could include a wheelchair or a cough assist machine. Jake Bright was given a wheelchair by the Joseph Patrick Trust, the welfare branch of the Muscular Dystrophy Campaign. After receiving the wheelchair from the care company, Jake started experiencing problems with his wheelchair. On several occasions it had been sent for repairs but it was still not working. We contacted the wheelchair company who agreed to give Jake a completely new wheelchair.
Experiencing problems at school?
Education can represent one of the biggest challenges for children with muscle wasting conditions and their parents. If you are facing issue with SEN statements, school placements, post-16 education or transition we maybe able to help. Annette was one of the first parents to access Parents Education Network. After reading one of Annette's posts about how her son Joe had been excluded from a field trip, our team contacted her. They worked alongside Joe's regional care advisor in supporting the family get Joe placed in Treloar College. Joe will hopefully be attending his first class next year.
Have you been discriminated against?
Cat was experiencing problems accessing specialised facilities at her university. The university refused to put locks on these facilities despite the fact they were specifically for disabled people. This was leading to misuse and often led to situations that put Cat's health at risk. Cat's mum contacted our team and they were quick to get to work. They wrote a letter to the university advising them that their approach to the situation was discriminatory. The university has since adopted the RADAR key system and provided more signage stating that the facilities are for the sole use of disabled people.
Are you having issues accessing transport?
Transport is an essential provision for people with a muscle wasting condition which can often be denied. Jordan Bentley has Duchenne muscular dystrophy and is wheelchair bound. He was due to start a diploma in IT at his local college but Essex County Council was refusing to provide him with transport. Jordan's mum Terrie contacted the team and they got Jordan's local MP involved. The MP was shocked by the Council's decision and wrote a letter demanding that they reverse their decision which they did.
Do you need support getting the benefits you are entitled to?
If you are having trouble with your care or mobility, or your ability to work is limited by your condition you may be eligible for Disability Living Allowance or Employment Support Allowance. Indra Wignall has a type of muscular dystrophy and had been denied DLA. By providing information about Indra's condition to the DLA unit the advocacy team were able to get the decision reversed.
The advocacy service is free of charge so if you are struggling to get the care and support you are entitled to, please contact us on 020 7803 4800. Alternatively, you can send us an email at firstname.lastname@example.org.