 | NATIONAL ECZEMA SOCIETY |
by Christine Funnell, Director, NESThe National Eczema Society has recently developed a new membership service
for medical professionals. Christine Funnell, director of the society, explains
how they hope to persuade doctors to join their campaign for better education
and information for eczema sufferers and their carers. Mrs Thatcher began the system of using senior retailers from Marks and
Spencers and Sainsburys to review the workings of the NHS and to advise on
customer care, and I am pleased that she consulted representatives of two of my
favourite shops. What a pity that directors of John Lewis, my other favourite shop, where
staff are major shareholders, were not consulted. We are also seeing the active
long-term involvement of retailing magnets at Regional and Trust level. Sir Philip Harris, whose wife is one of the inactive patrons of the National
Eczema Society (NES), but who has made substantial donations to our research
programme in the past, is now Chairman of the Lewisham Trust. His philosophy
when selling carpets was: "Pile 'em high, sell 'em cheap". So it will
be interesting to watch the developments in healthcare in south-east London. This philosophy and approach of the Government and the NHS is a challenging
one because one of the key ingredients of the success of our best known retail
chains - and retailing is one of the few activities that this nation is good at
- has been the philosophy of putting the customer first. Well, my job at the NES is to represent the customer, known in the (good)
old days in the NHS as a patient. It is clear that patient's need was not one
of the driving forces behind the formation of the NHS or we would never have
devised some of the care systems that have prevailed unchallenged for so long.
The shops are designed for customer convenience to encourage us to go in and
buy. The goods are there because the customer wants them. The assistants are
there to ensure that customers receive good service. There is a sneaking feeling, if one uses the shop analogy in the NHS, that
the shop assistants (i.e. health professionals) offer the goods in a way
convenient to them, and in a monopoly situation the customers have to put up
with it. The split into purchasers and providers has ended all that, and the
influence of the retail advisers will be felt throughout the NHS. Fortunately
for many providers the great British public "put up and shut up", but
with the showering of charters for patients, British Rail customers and
everybody else, complaint levels will increase, and hopefully people will
increasingly recognise their right to good prompt quality service and it will
be delivered. In the first 12 weeks of this year we received 7,000 letters from patients
at our national office. This does not include the 300 or so that we received as
a result of the steroid articles in the Sunday Express in December 92,
or the 500 or so we have received as a result of the Selected List proposals. Our society believes that physicians should view their patients as whole,
ordinary people who just happen to have eczema, or another skin disease, rather
than an interesting clinical presentation that happens to have a body attached
to it and that dermatology does not require the services of a retailing wizard
to enable us to improve patient care! In July 1991, the National Eczema Society sent a postal questionnaire to all
its 11,500 members to assess the impact of eczema on the lives of affected
individuals; to ascertain their expectations of their initial consultation with
general practitioners and hospital doctors; to assess their satisfaction with
these consultations; to obtain their views on the treatment prescribed, and
their reasons for joining the National Eczema Society. A summary of that survey is available from the society and shows the key
results of their needs. The most relevant statistic the survey revealed is that 72 per cent joined
the National Eczema Society to obtain further information about eczema and its
treatment, 89 per cent wanted information as to the cause of eczema and 82 per
cent wanted advice on the treatment recommended by their doctors. It is clear that patients with eczema wish, not only for a diagnosis to be
made and a prescription given, but also to have the condition explained, to
receive advice on how to minimise the affects of eczema, how to use treatments,
and a realistic indication as to what to expect from the treatment. Poor
quality information is a major cause of patient dissatisfaction. In December 1992, in two consecutive editions, the Sunday Express
published full-page features on the danger of overuse of steroids. Two articles
of this sort have been enough to undermine hundreds of others giving accurate
information. Unfortunately, people often would rather believe the newspapers
than their doctors, especially if doctors are off-hand, or appear not to be
interested or care. The National Eczema Society talked to the journalist concerned throughout
this period, but we were unable to persuade him to write a more balanced
article and, as a result, the Sunday Express was inundated with letters
and phone calls from people terrified that their treatments were causing them
untold damage. We have now got all those letters in our office and I am afraid to say, that
having read all 300 of them, there really is room for concern and worry, not
about steroids which are safe when used properly, but about the lack of
information that patients have a right to expect when they are given treatments
that carry a risk. For people with long-term incurable conditions such as eczema information,
support and practical advice on lifestyle and the impact of eczema on the whole
family is a major requirement. The provision of clear information, unambiguous,
practical and realistic advice on what can and should be done about it would
certainly increase patient satisfaction with treatments and care and increase
compliance with treatments. This need for information, explanation, advice and
support is increased by the uncertainty, misunderstanding, prejudice, and
ignorance surrounding skin disease by the general public. The most common complaint when people telephone our national office is that
eczema is not taken seriously by the doctor and is dismissed as trivial. Some
patients in the study (38 per cent adults) were unrealistic in their
expectations because they expected a cure. Many of our enquiries indicate they expect a cure to be available, and often
assume that a whole range of current fashionable, high-profile treatments are
in fact a cure. When we discuss with people that there is no cure but there are many
practical things they can do at home, school or work to maintain quality of
life and to feel in control, patients and carers find that eczema can be less
invasive. The philosophy of the National Eczema Society is that a holistic lifestyle
approach for people living with eczema is essential. The literature has several
references to the social and psychological impact of skin disease and our
experiences would reinforce totally the need for patients to be treated in a
manner which maintains their self respect and value as individuals. There are six guiding principles which encapsulate the points raised by our
members in the survey: - Full diagnosis and explanation of the type of eczema and its possible
causes and a prognosis, including information on the possible impact on
lifestyle and demonstrations and instructions on the appropriate use of
medications and treatment such as bandages. For example, patients do not lose
respect for doctors and nurses who explain that we do not know all there is to
know about eczema, its causes and treatments. They do lose respect and
confidence and become extremely disillusioned if they have been told they will
grow out of eczema and they do not.
- Communication by health professionals in clear and comprehensible terms
that are adequate to the patients' needs. This could include options for
treatment, clinical trials, likely outcomes, waiting times, complaints
procedures and offer of access to the National Eczema Society, its information,
publications and support systems. For example, the mainstay of treatment for
eczema remains the regular use of emollients, and use of appropriate strength
topical steroids when the eczema is active. We all recognise the difficulty of
persuading people to use topical steroids, and in the light of the experiences
of the Sunday Express readers, who can blame them, but our experience is
that if people understand exactly the mechanics of how they work and the
benefits they can offer, compliance will increase.
- Respect for and recognition of the intellectual capacity, experience and
knowledge of the patient and representative or carer. The nature and volatility
of eczema is such that their observations should be fully taken into account by
the medical team and used when decisions are made on improving and monitoring
health care.
- Consistency, continuity and accountability of medical care through a
clearly defined chain of command so that there is always a specified person or
department who is responsible for an individual patient's care. This is
essential. The letters printed on these pages indicate the confusion and
distress that is caused because of inconsistent and inaccurate information. The
National Eczema Society produces a whole range of information on all aspects of
medical and non-medical care. There is general agreement on the content and
quality of the information from dermatologists, general practitioners and
nurses. The provision of this information consistently and continuously by
medical and nursing professionals would do much to improve patients' quality of
life as the NES has demonstrated through its services and roadshows.
- Continuing support, especially if the eczema becomes chronic and
palliative care is required, together with care and support over periods of
acute ill health caused by eczema.
People with long term conditions have a different and special relationship
with their medical and nursing carers. They frequently know more about their
condition than the general practitioner or junior hospital doctor, and they
will be frequent and regular users of various services of the NHS. This should be recognised and developed so that trust, honesty and
understanding is developed on both sides. A contract where mutual expectations
can be agreed may be helpful so that ongoing support is available and the
patient or carer do not feel they are wasting the doctor's time. A recognition of the impact on all aspects of life by the doctor or nurse
acknowledging, for example, that parents will be exhausted after sleepless
nights and that adults may be worried about losing a job because of poor
time-keeping or lost days because of exacerbation, will help to make patients
and carers feel that their problems are understood and appreciated.
Understanding and acknowledgement by medical and nursing staff of the impact on
quality of life and reassurance, together with practical help are essential if
patients are to stay in control and not lose their self respect and ability to
cope. Immediacy of consultation, recognising that eczema can flare to acute
proportions in a matter of hours. The "open appointment" system
should be made available to all patients identified as needing this service. The traditional diagnosis, treatment and care process in hospitals can be
seen from the patient's perspective as a continuing series of queues. The
patient is passed from one specialist to another, waiting for services to
become available and for information about the patient to be passed along the
chain. This is not only distressing and de-humanising, it is also grossly
inefficient. The management of the clinics should be reviewed, and new and better ways of
transmitting the information which is so clearly needed and required, should be
found. Continuous videos, use of NES literature, group sessions for all new
patients, or training nurses and NES volunteers to provide general management
information should all be considered and used appropriately. Review and update of information is also essential. To assume that because a
patient has had eczema for years means that they are up-to-date and accurate in
their treatment management is just as dangerous as assuming that doctors and
nurses stay up-to-date and in touch with new developments without continuous
retraining and reading. The National Eczema Society is the leading dermatology patient support group
committed to working in partnership with our medical and nursing colleagues to
ensure that people with eczema and skin disease receive the quality care they
have every right to expect and certainly deserve. To support our colleagues we
have just developed a new membership service for professionals, to complement
our education programme. Case 1 "I am 26 years old and have never suffered with eczema until
approximately one year ago, when I began suffering from dry, irritating hands
which cracked and weeping repeatedly. I decided to see my GP as they became
very painful. He prescribed a steroid and advised me to use rubber gloves when
washing up and showering, and to avoid all contact with detergents. My hands did not improve nor did they get worse until four months later when
I went back to my GP. I was given more cream, told to use it sparingly but not
told of any time limit. Two months later I had no ointment left and started to get patches on my
elbows. The GP was alarmed to learn that I had been using this cream constantly
but sparingly. He changed the cream and put me down to see a skin specialist. A week later I developed horrific itchy blotches so made another visit to
the GP, who changed the prescription. The blotches have cleared up a lot but I
am totally embarrassed about the pigmentation, especially as I am teaching
aerobics and conscious of people looking at it. My appointment for the skin specialist came through in October 1992 for May
1993, some seven months wait". Case 2 "When Zoe was about 12 her eczema was so bad it was infected and she
was immediately admitted to hospital, where she was given potassium baths. She
was extremely distressed. I became very conscious when washing her clothes that I did not use
biological powder, I vacuumed her mattress nearly every day, I tried to get all
cotton underwear and socks, which was not easy then. We used oilatum in the
bath and emulsifying ointment instead of soap. These helped but only minimally. About a year later I decided to try homeopathy and found a much better
answer; she was given an allergy test. This showed she was allergic to white
sugar, pets' fur and house dust. I then used this as a guideline and tried to
avoid her coming into contact with animals, especially cats, which made the
eczema worse. This treatment was private and cost quite a lot of money. At the
time, money was hard to find but we were desperate ......" Case 3 "I am writing to ask you for advice. My son is almost five months old
and has been treated for eczema since he was four weeks old with hydrocortisone
cream 0.5 per cent. We are now in a dilemma as we have seen three different
doctors, two of whom have been cautious about the use of hydrocortisone cream
and the other advised me to use it to control the eczema. My health visitor assures me that prolonged use of this cream will not
damage my son's skin nor stunt his growth so she recommends that I continue to
use it. We have tried several times to stop using it for periods of several
days, and recently his eczema spread to cover most of his body when we tried to
hold out for a week. It started on his scalp, crusty-yellow like granulated
sugar, then moved on to his ears, cheeks, and the creases in his elbows and
knees. Since last week it has erupted on his chest, arms, wrists, fingers,
ankles, upper legs and feet. We stopped bathing him in an attempt to control
it. We have used the following: E45; Aqueous; Kamillosan; evening primrose oil
cream; Bodyshop baby oil; Boots lanolin free baby cream; zinc and castor oil
cream. All have failed. My GP who recommends the use of the hydrocortisone, without great messages
of caution, has recommended that I try several different emollients until I
find one that suits and then she will prescribe a large pot. She also tells me
that it is better to control his eczema using a mild steroid cream rather than
let it deteriorate to the point where a stronger one may then be necessary to
control it. I have found her advice very reassuring yet I am still worried
about the continuous use of steroid creams, especially on his face and forehead
where it can be quite bad. Please can you recommend a cream or emollient which we could use to help him
with the itch and dryness and also a bath oil.
National Eczema Society
163 Eversholt Street
London
NW1 1BU  020-7388 4097
 020-7388 5882
 http://www.eczema.org/
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