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.
