Letter from Macdonald Curran

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Mr. Andrew Dillon
NICE
Nice@Nice.org.uk

June 28, 2007

Dear Mr. Dillon,

It is with deep sadness, regret and finally anger that I read your recommendation to override clinical research and limit treatment for Macular Degeneration (MD). As one who has come through the roller coaster of vision loss and suicidal mental depression as a result of suffering from MD, I know the vast pain and suffering that I and my family have gone through and continue to go through with this disease. I never have a day where I am not reminded that when I was diagnosed with MD, I was told by my Doctors that a new treatment had been tested and would shortly be available. This new treatment would, in all likelihood, prevent my total loss of vision. I was diagnosed with MD in July 1999. Within 7 months of diagnosis I was registered blind in my hometown of Ayr Scotland. In quick sequence

I lost my job,
I lost my mobility and had to re locate back to Scotland,
I lost my business and social friends,

I lost my eyesight while enduring the harsh mental realities of beginning a new life that I never wanted and had no voice in choosing, I fell into a deep suicidal depression which lasted almost three years.

As stated above I became mentally depressed to the point of suicide. Thanks to my faith, I am alive today. For almost three years I wished every morning that my prognosis had been terminal rather than live in this world of blindness. I now had a life filled with constraints and self helplessness on a never ending basis. The Lack of independence, lack of self worth, my inability to read or write or drive and unable to recognize faces was a continuing horror to me. Worst stil, I was unable to recognize non verbal communication, which constitutes over fifty per cent of human communication and on sensitive issues as much as eighty percent.

Please try to understand the mental impact of the disease before you implement a cruel process where you substitute a bookkeeping decision over the results of proven science and the relationship between patients and physicians.

I can assure you the long term mental impact is as costly and difficult to manage as the vision loss that follows.

This is the life sentence you forcing on the innocent patient who does not know how much sight will be gone and how divesting life will become.

Seven years later having learned to accept my handicap I still suffer with post traumatic stress syndrome. Please understand the mental and physical impact of your decision on thousands of lives before you needlessly add to the pain and difficulties that arrive with the on set of this disease.

What you are proposing is almost criminal. Many go home after diagnosis and exclude themselves from life and commit a silent euthanasia as living with lack of vision and the resultant fear is unbearable in many cases.

Death is preferable to living in a constant haze.

Fiscal impact.

The cost of treatment is a concern but the cost of not treating should also be a concern.

I had a senior executive position before MD and realize budgets and expenditures in many cases have a short term window. In mine and most other cases the ongoing health costs are greater than any false savings on treatment cost.

Anti depressant medication for years , ongoing therapy, loss of taxation, additional social benefits and various travel and support benefits are very real costs that do not take into account the holistic obligations and supporting the pledge of our leadership in NHS for the elderly.

The Condition seems so dry on paper, yes we loose our central vision sometimes just clouded over but progressing to a black hole with only limited side vision.

Mental disorders such as Charles Bonnet syndrome develop creating hallucinations, distortion, flashing and in many cases giant concerns that ones sanity is gone amidst a fear that discussion will lead to institutionalization. Suddenly you fear noise as you have no vision to identify the cause and usually the mind creates many scenarios that are extremely frightening.

Anxiety attacks when out doors are prevalent in many, crowds and public transport is a nightmare and one can go on forever. Next time you are in the street close your eyes, walk a bit and experience the fear that is our daily reality.

We Have Been Here before. The sad part is we have been here before as the same scenario was created with Visudyne and one can only speculate that the process was a fiscal success but one wonders how many went blind unnecessarily given the restrictions on PDT, how can you continue this crime on our citizens.

I went legally blind waiting for Visudyne approval by NICE. I was only months from keeping my life. Nice is now repeating the pattern. This is plainly wrong.

Many years ago Nye Bevin created the NHS for treatment to all. If the mission statement has changed please be honest with citizens and advise them Health service is not free and other arrangement and solutions need to be developed. Instead of taking the easy route and just denying valid treatment, deal with the problem of funding and Health provision instead of denying proven clinical medications and the expectation that has been promised. We, the citizens of UK have the right to integrity and have the promise of moral and proven health care delivered.

NICE. Please remember that these initials promise CLINICAL EXCELLENCE. You have stated that these medicines are safe, effective and have no substitute. Clinical excellence demands giving access to the patient who so badly needs this help.

Lastly my sympathy also goes out to our wonderful doctors who try to provide patient support despite constant bureaucracy interference by non doctors making medical decisions. They took an oath to administer to the sick and are now being directed to ignore sickness till certain conditions are met. When I visited Moorfields last week for my annual check up the consternation shared by the clinical experts was of major concern. There is no accountability as the decision processes are so fragmented no one is responsible. What is disgraceful is we train our medical profession to a very high standard then with bureaucratic arrogance prevent them accomplishing that which we trained them to accomplish.

My final appeal is for NICE to either disappear or re focus on creating a solution to the health provision problem with a system that is transparent, honest, holistic and allows our NHS to do it’s job as promised.

I am yours sincerely,
Macdonald Curran
32 Elmstead Lane, Chislehurst Kent BR7 5EG