Tuesday 3 July 2012
Report signals turning point for Northern Ireland care
People in Northern Ireland living with muscular dystrophy and related neuromuscular conditions are experiencing stark gaps in specialist care, according to the results of a major inquiry launched today in the Northern Ireland Assembly.
The findings published in The McCollum Report by the All Party Group on Muscular Dystrophy have triggered calls for immediate action to improve specialist services for the estimated 2,000 people with muscular dystrophy and related neuromuscular conditions in Northern Ireland.
Over 100 patients, families and health professionals and Members of the Legislative Assembly (MLAs) joined forces at the event in the Northern Ireland Assembly to highlight the urgent need for the recommendations in the report to be implemented.
Over the past nine months, patients and their families have given harrowing accounts to the All Party Group of years waiting for an accurate diagnosis, parents being left in the 'wilderness' after confirmation their child had a fatal condition and young people forced to wait over a year to have wheelchairs and other vital equipment repaired.
The McCollum Report, backed by the Muscular Dystrophy Campaign, also tells how £2.27million is spent on emergency hospital treatment for people with muscular dystrophy and related conditions, yet NHS studies suggest that up to 40 percent of these stays could be avoided if just £160 per patient (£320,700) was invested in preventative care.
As the first in-depth investigation into the specialist care for people affected by muscular dystrophy and related neuromuscular conditions, The McCollum Report reveals that:
- children in Northern Ireland are waiting months for vital appointments, and adults sometimes several years
- families are enduring months of agony waiting for diagnosis because of ‘excessive’ red tape around funding for genetic tests, in contrast to the rest of the UK
- the whole of Northern Ireland is served by just one specialist care advisor - a role that has been left empty for six months - while England has funding for 23, Wales three and Scotland three. (Care advisors offer hands-on health advice, information and emotional support to patients and their families, and can help guide them through the maze of health services.)
- healthcare is focused on children, with services dropping away in adulthood - often when patients' health is at its most critical.
MLAs named the inquiry report after Gerry and Geraldine McCollum from Bangor, who lost their son Christopher to Duchenne muscular dystrophy when he was just 16 years old. They have campaigned with the Muscular Dystrophy Campaign for health services for people with neuromuscular conditions for more than a decade. Gerry said:
Christopher was always a happy boy and his courage and determination was an inspiration to everyone. He did not deserve the horrific 18-month period of suffering he endured after having spinal surgery when he was 13. It took a year and a half for Health and Social Care (HSC) in Northern Ireland to supply a suitable powered wheelchair for Christopher, due to lack of funds. Even though he had a life-limiting condition he was given no priority. It is vital for people with a neuromuscular condition, especially if life limiting, to get the equipment they need as soon as possible.
The delay took a severe toll on his health and quality of life. Christopher suffered severe pressure sores which took months to heal, a tilt to his neck due to no firm wheelchair head support and severe loss of weight. Due to 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 through investing in his care and would have saved the HSC thousands of pounds.
Our fear that no lessons would be learned from what happened to Christopher has been realised. We heard recently of a 15-year-old boy with Duchenne who needs a new wheelchair head support but has had to wait a year to see an occupational therapist and another who waited months for a new wheelchair and suffered pressure sores, just like our son. We know of a six-year-old boy, who having been measured for his first wheelchair was then put on a waiting list. This was despite wheelchair services knowing muscle weakness had forced him to use a child's buggy for two years. Twelve years since Christopher went through his ordeal, this is still the reality for families.
Conall McDevitt, MLA for South Belfast and Chair of the All Party Group (APG) on Muscular Dystrophy, has vowed to push ahead with building specialist care for muscular dystrophy. He said:
This inquiry is not to be taken lightly. It is the culmination of a decade of ceaseless campaigning by those affected by these devastating conditions and their families. We are committed to taking the recommendations of this report forward, and to addressing a long-standing hole within Health and Social Care in Northern Ireland.
The specialist neuromuscular health professionals we have are empathetic and dedicated. However, they face an impossible task. We have 2,000 families struggling to gain appointments with consultants who simply do not have the capacity to cover them. We have a single care advisor post which has been left empty for six months. The lack of clinical time that is available to patients is of grave concern.
Among the recommendations made in The McCollum Report are:
- that a 'lead' be appointed for muscular dystrophy and related conditions to identify and address gaps in specialist healthcare and services
- that further care advisor posts are created to reflect the number of patients affected
- that a 'streamlined and efficient' genetic testing system is developed to reduce delays and reduce demands on clinical time.
Nicholas Bungay, Director of Campaigns, Care and Information at the Muscular Dystrophy Campaign, said:
The Health Minister's assertion that he has 'infinite demands but finite resources' rings hollow for families living with these devastating conditions. Emergency hospital treatment for people with muscle-wasting conditions currently costs Northern Ireland £2.27million per year. There is evidence from other parts of the UK that around 40 percent of this cost can be saved by intervening with treatments, advice and equipment.
We are asking for a fraction of what is wasted every year to be invested in care. This is an opportunity for Northern Ireland to save funds while improving quality of life for thousands of people.
Vast improvements in healthcare for people with muscular dystrophy have been made in England, Scotland and Wales in recent years, but lack of investment has left Northern Ireland trailing far behind. We at the Muscular Dystrophy Campaign hope that the results of this inquiry will bring real change to families who have fought so hard for vital improvements.
The Muscular Dystrophy Campaign provides all the organisational support for the All Party Group on Muscular Dystrophy in the Northern Ireland Assembly.
For more information about the Muscular Dystrophy Campaign's campaigning action in Northern Ireland, please get in touch:
020 7803 4839
j.kingsley@muscular-dystrophy.org
