Tuesday 3 July 2012
We had to continue to campaign
Gerry and Geraldine McCollum from Bangor have been dedicated supporters of the Muscular Dystrophy Campaign for many years. Their son, Christopher, was diagnosed with Duchenne muscular dystrophy in 1989 at the age of five, and passed away in 2001. They have remained at the forefront of the Muscular Dystrophy Campaign's efforts to secure service improvements in Northern Ireland and a report published by the charity was named in their honour. They talk to us about why they got involved in campaigning.
While general support and care for Christopher were good, there was a delay in wheelchair provision after his spine operation. It took 18 months to get a suitable powered wheelchair for him. This was mainly because of lack of funds and it was made more difficult given that he had a progressive, life-limiting disability, which was not recognised in the procedure at all. He was considered no different from someone aged 50 who, while needing a wheelchair, may not have had a progressive or life-limiting disability.
The delay had a huge impact on his quality of life. He suffered severe pressure sores, which took months to heal; a tilt to his neck because he had no firm head support, and loss of weight. It also cost the NHS thousands of pounds to treat these problems. Because of his poor health at that time, the MRSA superbug opened the scar on his back which, over 14 months, cost thousands of pounds to treat. All of these problems could have been avoided. We also believe similar problems could arise today.
Despite his disability, Christopher was always a happy boy with a wonderful smile. His courage and determination were an inspiration to everyone. He did not deserve what he had to endure for18 months. Young disabled people who are born with a condition inspire and teach us all so much. Everyone with a disability should be provided with the best care and support and should get the equipment they need as soon as possible.
In 1998 we started to campaign for better provision, and we met the Health Minister in 2000. Sadly in 2001, Christopher experienced further delays. We planned again to meet the Health Minister. One day Christopher said he would go along to meet him, to say how he felt. He died a week later and never got the opportunity. We knew then, as in 1998, that we had to continue to campaign to improve care and support for everyone with a neuromuscular condition.
We welcome the All Party Group Inquiry. It is a great achievement, ten years after Christopher died, to see these issues now being debated within government. The Muscular Dystrophy Campaign should be applauded for supporting everyone in Northern Ireland with neuromuscular conditions.
Throughout the UK, community support networks - or Muscle Groups - have been established to bring together those living with muscular dystrophy and related conditions with clinicians and key supporters, encouraging them to share knowledge and offer advice and support, and to campaign for better services. If you would like to know more about campaigning email email@example.com or phone 020 7803 4847