At Last a National Response to a National Problem

It's difficult to think of an organisation which has been more damaged by the 'law of unintended consequences' than has the N.H.S. The perfectly laudable aim of making local services more locally accountable, more autonomous and able to exercise more control over their budgets has in some ways broken up the N.H.S so that it no longer provides universal health care on an equal basis for all. The sort of treatment you get may depend upon where you live....the so-called Post Code Lottery of Health Care. People suffering from uncommon diseases, in which there are few specialists, are obviously the ones who find it most difficult to access diagnosis and treatment. If there is no specialist in your area for your condition and, your local health authority is unable to fund your referral to an area where there is one, then you are one of the losers in the 'Post-code lottery' for health care.

Three Specialist Centres
There are only three centres in the U.K. where there are teams specialising in Mitochondrial Cytopathies,
1.The Royal Victoria Infirmary, Newcastle -Upon-Tyne,

2.The Radcliffe Hospitals, Oxford

3.University College of London,Institute of Neurology,Queens Square ,London.

Getting sufferers to one of these centres has depended totally on the willingness of the patient's local health authority to fund the referral. Some health authorities are able to do this. Unfortunately others are not because of budgetary difficulties.

National Commissioning Group
At last this problem is being addressed. Within the N.H.S. a new body has been created,namely the National Commissioning Group (NCG). As from 1st April 2007 the NCG is funding a NATIONAL referral system for Mitochondrial Disorders. The three centres, Newcastle-Upon-Tyne, Oxford and London are working together in this exciting project. The costs of referral to one of these centres will now be centrally funded, no longer putting pressure on local health budgets.

Professor Doug Turnbull, of the team working in the Royal Victoria Infirmary, Newcastle-Upon-Tyne, asked June, a long time sufferer, what she thought of the NCG project. June wrote:

Difficulties in getting a Diagnosis
Twenty years ago I was diagnosed with a mitochondrial myopathy in Newcastle General Hospital. It had taken five years to find a doctor who recognised the condition. I am originally from Newcastle but, at that time, I lived eighty miles away in North Yorkshire and it was fortunate for me that my family back in Newcastle had persuaded me to try acupuncture in Newcastle. The acupuncturist recognised a muscle wasting disease and referred me to a muscle specialist he knew in Newcastle General Hospital. Prior to this I had been investigated first in Scarborough and then in Middlesbrough but to no avail. No blame can be attached to neurologists in either of these places as, in the early 1980s, mitochondrial cytopathy was just beginning to be recognised as a condition by a very small number of specialists. Fortunately I had the right geographical connections to receive a diagnosis. Others I have encountered have not been so fortunate and this is why I am so delighted that a nation wide referral system is to be established led by Professor Turnbull’s team in Newcastle. Where you live will no longer determine your chances of a quick diagnosis and treatment.

Disability and Isolation
Any condition which causes disability necessitating a drastic change in lifestyle is distressing both for the sufferer and family. However in the case of a little known condition that distress is compounded by a feeling of isolation. Nobody had heard of the disease and even my G.P. struggled with the pronunciation. And because it is a little known condition some people , including some authorities, seemed less able to extend sympathy than they would to a well known disability. You feel ‘on your own’. It was twelve years after my diagnosis that I first had contact with another sufferer.

At Last an Explanation for what’s Happening to me.
Strange as it may sound I experienced a great sense of relief when my condition was recognised and I was given its name even though I now knew it was incurable and the prognosis was not particularly good.. Others I have spoken to have had exactly the same feeling.( One person even told me of a sense of elation. ) At least now you ‘know your enemy’. I now knew it was not simply hypochondrial, caused by a weakness of character or a psychosomatic reaction to an inability to cope with the stresses of life as had been suggested to me. Once you and your family know of its reality then you can say…”Now what are we going to do about it.” Quite apart from the clinical expertise which Professor Turnbull in Newcastle and his colleagues in Oxford and London can bring to bear on the physical manifestations of the conditions, the mere existence of this new dedicated service gives sufferers a tremendous psychological boost. It raises morale. We are no longer alone, no longer unrecognised ,no longer peripheral.

As I have written, I have lived with this condition for over twenty years. It has not been easy and it is still not easy but it would have been incalculably worse if I had not had, and continue to have the unstinting care and support of Professor Turnbull and his team. I feel gratified that, thanks to the establishment of this new service, this level of care and support will now be available to all mitochondrial sufferers irrespective of geography.

June