Tuesday 15 February 2011
Northern Ireland’s Care Advisor post saved
Following pressure from families across Northern Ireland and the Muscular Dystrophy Campaign, it has emerged that the job of a Care Advisor, a "lifeline" for families, has been saved by Northern Ireland's health bosses.
People living with muscle disease across Northern Ireland had made an emotional appeal in the light of the significant risk of losing the Care Advisor post.
Michaela Hollywood, who has Spinal Muscular Atrophy, and her mother, Maria, spoke out last month after NHS leaders failed to commit to funding the specialist neuromuscular Care Advisor post after March 2011.
Northern Ireland has had a Care Advisor for the past three decades, offering vital health information and emotional support to people of all ages affected by muscle disease and their families. The Hollywoods spoke of their relief and elation after the Muscular Dystrophy Campaign, which has part-funded the post to date, confirmed the NHS's agreement to provide full, ongoing funding for the role.
Michaela said:
This is just incredible news. The thought of losing our Care Advisor was just absolutely devastating. I cannot describe how vital she has been not only to me and my family but to the hundreds of others who she is there for. Muscle-wasting diseases are rare and not even GPs know anything much about what it is like to live with our conditions. Having someone there who genuinely understands and is able to help with all the problems, health-related and otherwise makes an enormous difference - it keeps people out of hospital.
Muscle wasting diseases can completely devastate families. The Care Advisor is not only the first person that we turn to not only for practical and medical care but also for the emotional support that is so badly needed at times. I lost my sister to muscle disease and our Care Advisor at that time was the first person at the door. The idea of other families going through that experience alone horrified us.
I am just so relieved to know that this lifeline will continue.
While news of the funding was welcomed by the Muscular Dystrophy Campaign, specialist neuromuscular care in Northern Ireland still lags behind other parts of the UK.
During a debate in the House of Commons on services for patients with neuromuscular conditions last week, Foyle MP Mark Durkan said that services were not as they should be for patients in Northern Ireland:
Unfortunately, when a child is diagnosed with muscular dystrophy parents often have to navigate systems and negotiate services as though they were the first to find themselves in that situation. Families need support, and they expect the system to provide it. For people with muscular dystrophy that does not always happen.
Mr Durkan also said that the cost to the NHS of emergency treatment could be reduced by providing better specialist care for the estimated 2,000 patients across Northern Ireland:
Unplanned emergency admissions cost at least £2.25 million a year. Cutting corners in such areas in the name of efficiency savings is wrong, and some of the cuts and squeezes taking place are counter-efficient.
Nic Bungay, Director of Care, Support and Campaigns at the Muscular Dystrophy Campaign said:
While it is a great relief to us that the future of Northern Ireland's neuromuscular Care Advisor has been secured, the fact remains that patients living in the country receive a fraction of the support available in other parts of the UK. We will continue to fight for investment in Care Advisors, consultants and specialist physiotherapists and to back families in their campaigns for a fair standard of care.
For more information about the campaign to improve services in Northern Ireland, please get in touch:
020 7803 4839
campaigns@muscular-dystrophy.org
CampaignsMD Blog
Twitter: CampaignsMD
