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Discussion:

I have been recently contacted by the Lupus group for photo-sensitive patients. They have started a campaign and we would like to have your views: Below is a copy of an article in By Brenda Ryder taken from their last Newsletter:

Recognition and Provision for Light-Sensitive Patients:

Request for safe premises for hospital and surgery appointments:

Several members have commented on how they dread a hospital or doctor's appointment and are fearful of a stay in hospital because the fluorescent lights and unscreened windows will damage their health. These experiences are shared by patients with Xeroderma Pigmentosum (XP) and other light-sensitive sufferers for whom a hospital, doctor's or dentist's appointment can be a grim ordeal.

In this age of disabled access to public buildings, it seems inconsistent with the tenets of the Disability Discrimination Act that light-sensitive patients should have their condition aggravated by accessing basic health care.

With this in mind I consulted my MP Andrew Turner who very kindly visited me in my home because there are fluorescent lights in the venue used for his local surgery. I explained the difficulties of doctors' surgeries and hospitals to light-sensitive patients and how some modest alterations (elimination of fluorescent lighting, screening of windows) would ensure a safe appointment or stay in hospital. Andrew Turner thought that the existing legislation of the Disability Discrimination Act should cover this provision but that the providers need to be made to realise this. He advised that I write to the Health Secretary with my concerns and has asked to be kept informed of Mr Milburn's reply.

A quest for disability grants in the future:

Because of the rarity of our condition we need to raise awareness to get the same recognition and provision given to people with other disabilities and impairments. Some members have asked what they can do to protect themselves and overcome their restrictions on a limited income. (There are sufferers who have to stay indoors with closed curtains to prevent themselves from becoming really ill). It seems evident that patients with extreme light sensitivity are at least as disabled and restricted as, for example, many wheelchair-users and should be given financial assistance with the screening of home and car windows on the same basis as help is given to other disabled persons. There is clearly much work to be done to gain recognition and provision for light-sensitive patients. Please take every opportunity you can to raise the profile of severe light sensitivity. Sandra Webb heads the XP group and approved my letter to the Health Secretary. Lobbying has had to take second place to Sandra's work of running the support group. However her members share similar difficulties with the lighting in public buildings, which they are keen to have addressed. Sandra is called upon to offer support to families with an XP sufferer and to even greater numbers of patients with other light-sensitive conditions because they have nobody to represent them. There are about 40 diagnosed cases of XP in this country. The XP group currently has registered with them 55 children and 106 adults with XP or light-sensitive conditions. Sandra suggested that I send a copy of my letter to Bruce George MP, Chairman of the All Party Parliamentary Group on Skin, who is very aware of XP and light sensitivity following Sandra's talk to the Group last November. STOP PRESS! Response to request for safe hospital provision: I sent a copy of my letter to the Health Secretary to the Chief Executive of my local hospital with a covering letter, enquiring whether they were aware of severe light sensitivity and would be able to accommodate a patient with this condition. My letter passed through various hands until it reached the Occupational Therapy Department. A therapist who deals with disability provision has contacted me and I was most impressed by her interest in the implications of our difficulties and appreciative of her efforts to make suitable provision. These are the measures being taken: The ambulances have been checked and already have UV screening. My file will be marked for the requirement to be kept from light, so this need can be responded to in any department. There will be a single hospital room with screened windows available for the use of a light-sensitive patient. The therapist mentioned that in some cases it is possible to have a home visit but I would prefer not to take more time of an overstretched professional. We discussed the option of a first appointment so there would be no need to wait under fluorescent lights. I commented that there was one department with very understanding staff who let me sit in an empty room with heavy curtains drawn and I was always grateful for this.

However I know this is not always possible and unfortunately some patients have had to contend with doctors who know about their condition and think it is just something they have to put up with. This therapist has a commitment to ensuring that all disabilities and impairments, no matter how rare or individualistic, are catered for. She is going to have a meeting with another professional involved with disability management and has offered to write a guide for offering safe hospital provision for light- sensitive patients which can be posted on our Eclipse website (which will soon be up and running). This should prove helpful to those members who are not being listened to, so you can take the guide to your local hospital to show what can and should be done.

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