Annex
LIVING WITH ALLERGY: THE PATIENT'S EXPERIENCE.
A SURVEY FROM ADDENBROOKE'S HOSPITAL ALLERGY CLINIC
Addenbrooke's Allergy Clinic sees about 5,000
patients a year, mostly referred from the East Anglia Region and
the north east home counties, but a proportion travel longer distances
to the clinic.
We wanted the Health Committee to be able to
hear about the experience which very ill patients are having of
allergy care in the contemporary NHS, what they think about it
and what they consider important.
Telephone contact was made over the May bank
holiday weekend and, for one contact, immediately afterwards,
with 12 patients selected to demonstrate some of the problems
typical of those we see in patients attending our clinic.
Those contacted were told about the Health Committee's
Inquiry and asked whether they wanted to tell the Committee about
their experience. All said yes; several went out of their way
to welcome the Enquiry before the interviews began.
The interviews were carried out by an experienced
colleague working independently from the clinic in order to capture
the patient's own perspective.
It is estimated that a minimum of three million
people have serious allergies in Britain. Perhaps 260,000 of these
people will have found their way to a clinic with some expertise
in the management of allergy; and perhaps 50,000 a year will do
so each year at the moment.
We cannot comment on what happens for those
that do not reach specialist allergy advice and help. Here are
the stories of some that have done so. A comment has been provided
for each report and a clinical summary has been added from the
clinic. Names have been changed; the rest is verifiable.
REPORT OF
INTERVIEWS
Summary of Findings
— Allergy makes its presence known
in very different ways.
— A common experience is that people
felt they were working on their own to manage a persistent, wearing,
often unpredictable and sometimes dangerous illness.
— Many people were anxious; this was
more so if a child was involved.
— In every case very substantial health
gain was achievable with proper medical care.
— When care was effective, this came
about through recognition of the needs of the whole person and
of all aspects of the illness.
— The search for help through the NHS
was all too often blocked at some point, often at several points,
and sometimes for long periods of time, by a health service ill
prepared to care appropriately for severe allergy.
— Considerable resolve (or luck) was
often required to negotiate or find a way through the system of
front line care and referral.
— Experiencing lack of understanding
and help, people were frustrated and sometimes frightened by what
they needed to face.
— People had to, and were prepared
to, face long journeys to get the right help.
— All this when people have severe
and often dangerous disease.
1. Mrs Andrews spoke about her son, Peter,
aged 13.
Clinical summary: nut anaphylaxis; allergic
asthma; allergic rhinitis; egg, kiwi fruit allergy.
"We moved to Cambridge when Peter was three.
The GP referred him to Addenbrooke's because he had instructions
from the Department of Health that peanut allergy could be serious.
From that point on it all worked well. I think now how fortunate
we are. With anaphylaxis it's outside your control, you can't
just give medication. It's frightening and distressing. But we
feel that support is there. The community paediatric team visited
us and talked it through, so we feel supported. They also visited
the nursery and trained them. And now they visit the school, and
they visit every year as he moves through the school. We can phone
the nurse whenever we need to. At school he isn't treated differently
and he's not prevented from doing anything. Now he can manage
himself; it has helped him to be more confident.
When he was aged one he was treated in London
for his eczema. The consultant then said that peanuts are `bad
news' and when he is a teenager and goes to parties he may have
to take medication. That's all he said. Nothing about other nuts
or foods. Looking back we should have followed that up."
Comment: Good allergy care is not beyond
reach. GPs need central guidance as well as a local context. A
specialist clinic supports the patient and the family and other
public services, making a network of supportive care. Even when
eventual outcomes are good, allergy patients have often received
inappropriate advice at an earlier stage.
2. Mrs Baker spoke about her son, Paul, now
aged 13.
Clinical summary: Referred as multiple
antibiotic allergy; antibiotics needed for ear infections but
not known which if any could be given; diagnosis identified as
not allergic and which antibiotics are safe to use.
"It began when he was 18 months old. He
had recurrent ear infections and violent reactions to antibiotics.
Over about seven years he had operations to help sort out his
ears. But last year he had another infection while we were in
Majorca. And we had to sort out his allergy. We had to wait nine
months for an appointment to Addenbrooke's. And all the testing
was nerve wracking; it took the best part of a day; and there
wasn't enough room in the clinic so we got shunted around. But
eventually it came out all right because now we know what forms
he can use in an emergency.
At some stage we saw a paediatrician in our
local hospital. He took blood samples and said we should use adrenaline.
Going to Addenbrooke's was traumatic. We had
to travel 50 miles, then 50 miles-back. It wasn't pleasant.
But there's a sense of relief in the end."
Comment: Repeated wrong diagnosis in
primary and secondary care due to lack of allergy knowledge. Clinic
role is also to investigate and advise on multi system non allergic
illness. And to establish drugs which are safe for the patient.
3. Mrs Campbell aged 78.
Clinical summary: Aspirin sensitive asthma,
rhinitis and nasal polyps.
"I developed asthma for the first time
in 1979; the doctors said it was stress related; also nasal polyps.
I have been under continuous treatment since 1984. I have had
two emergency admissions for asthma. I have had my sinus washed
and scrapped. In 1992, after my sinuses were washed a second time,
I was told that I was too impatient and I should give it time.
I was upset that day. In 1997, my GP had tried everything. He
asked if I would be prepared to go to Addenbrooke's (200 miles
away).
My first consultation lasted one hour and 20
minutes. What understanding. Here was somebody who knows what
I am saying and what it's like. He said he wished he had seen
me 10 years before.
I had been on steroid tablets for 20 years;
he took me off them; my asthma control is much better. But my
polyps had to be removed. I had the operation privately in 1998.
I couldn't wait. I had a second operation in 2002. That was private
too. I feared a long wait.
I still have no sense of smell; they said a
box of chocolates when I got it back; no chocolates yet.
Addenbrookes is a long way to go. But where
else is there that I would have had this help?"
Comment: Delays in diagnosis resulted
in 20 unnecessary years on oral steroids. Mrs Campbell lives in
a part of the country where allergy care is inadequate. Allergy
advice was needed and referrals to other consultants were not
an adequate substitute.
4. Mr Diamond, aged 47.
Clinical summary: Severe hay fever; desensitisation
treatment; disease now controlled.
"Basically I have had hay fever for as
long as I can remember, certainly from when I was at primary school.
I worked abroad a lot until about 10 years ago. When I returned
here to work the symptoms became much more pronounced. I am an
airline pilot and we have a lot of pressure changes and this was
leading to sinus infections and time off work.
Since I have had the treatment at Addenbrooke's
there has been no recurrence.
My wife suggested I try the treatment. My GP
wasn't unsympathetic; but basically wasn't able to advise; he
sent me to an ENT person, who sent me on to Addenbrooke's. I had
to find my way to the right place. The treatment is weekly injection
for two months, then monthly before the season, going on for at
least three years, and they only do it one morning a week. It
would be convenient if it was more available; but my employer
has been very good about it."
Comment: Hay fever is not always trivial;
disrupted family life and threatened job performance. Patients
have to negotiate their own way through the system, often leading
to inappropriate clinic appointments and contributing to inefficiencies
in the NHS.
5. Dr Edmonds, aged 26.
Clinical summary: Aspirin sensitive asthma;
treated without allergy diagnosis since a small child; now controlled
for the first time.
"I wasn't referred at all for allergy.
I had asthma from age five, which was GP and
chest clinic treated. My asthma was difficult, with numerous A&E
admissions. I was in an undergraduate seminar, and my asthma was
bad, when a tutor said that he was working with a doctor who was
interested in my type of asthma. They were in the same laboratory,
so I went to the Addenbrooke's Allergy Clinic.
I did my post-graduate in Oxford. The GP there
said that there was no equivalent place in Oxford for me to be
referred to, so I commuted to Cambridge for treatment.
Now I haven't had an attack for over a year.
I have to avoid fruit. But I can have chocolate and gin."
Comment: Lottery of care. Poor control
of asthma for many years because of failure to recognise allergic
triggers and treat appropriately. Inappropriate referrals led
to costs to patient and the NHS. It was luck that got this patient
to an allergist.
6. Mrs Fellows, spoke about her daughter,
Anne, aged 10.
Clinical summary: Peanut allergy, eczema,
hay fever, allergic asthma.
"When Anne was 18 months I gave her a crumpet
with peanut butter. I left the room. When I came back she was
floppy in the high chair, one eye was swollen, she had a rash
and had vomited. I rang the doctor; but it was lunchtime and I
was told to wait. I went down anyway. They said it was a reaction
to something; and said to go to the chemist and get some piriton.
She vomited again and we went back to the surgery. Eventually
we got the medicine down her.
I then read in a newspaper an article by the
man from the Anaphylaxis Campaign. I got in touch; he said I should
demand an allergy test; the doctor said no; the Anaphylaxis Campaign
sent a copy of a White Paper which said I had a right to the test.
They then referred me to Addenbrooke's.
Then the full enormity of what was wrong fell
on me. I thought this would go away. That's not the case. Anne
is now 11. I have been to Addenbrooke's every year since. She
has been to hospital twice. I have had run-ins with play groups,
schools, especially in the early years. That is less so now. In
the current school (350 children) there are three children with
nut allergy, and other allergies as well. The head couldn't be
more sympathetic. But now we have got the secondary school coming
up, and that's a new ball game.
We now live in (750 miles away from Addenbrooke's,
round trip). I have just come back from a visit to the clinic.
I feel safe with Addenbrooke's. Nobody here is as involved. I
can't take a chance; it's my daughter's life.
There is no awareness of the seriousness of
the situation. Nobody seems to be taking it seriously. It's a
tremendous worry, constantly."
Comment: Need for a national network
of expert care.
7. Mr Garner, aged 60.
Clinical summary: Angioedema of the tongue
with respiratory and cardiac arrest; drug cause identified; no
further attacks.
"I woke at seven in the morning. I couldn't
speak. I thought I had had a stroke or something. My wife called
the doctor and we were taken to hospital. My tongue was swelling
and bleeding. In the hospital they summoned all the doctors, it
was an unusual case. I thought they nearly talked me to bloody
death. I suffocated; and was rushed to intensive care. They couldn't
get me to breathe. They did a tracheotomy and tried to get me
round. I was fighting, fighting. They gave me adrenaline to the
heart. They told me they were massaging for half an hour. I was
covered in blood. I had had my throat cut.
I had two days in a private ward; then they
discharged me. After, I wrote to ask what happened. They said
my pulse had dropped, incompatible with life, and they couldn't
get me to breathe.
They mentioned in passing that there was Addenbrooke's.
I rang them and made an appointment. I heard about a referral
weeks later.
The second time it happened was worse than the
first. But Addenbrooke's had given me the preparations and I knew
what to do. And I rang Addenbrooke's again straight away.
They don't treat this thing seriously and they
don't know what to do. You hear weeks later about a referral.
At Addenbrooke's I ring up and they say come straight in."
Comment: Delay and six months wait, despite
near death; inappropriate response to drug-induced allergy emergency.
8. Mr Halsey, aged 47.
Clinical summary: Severe hay fever; 14
years of long-acting steroid injections; 90% improvement on immunotherapy.
"I have been a hay fever sufferer for over
20 years. After I was 27 it got progressively worse; the season
went on from April to November; it was terrible; attacks might
last two to three days; my nose was running; I was sneezing constantly;
I couldn't sleep and finally couldn't work.
The GP prescribed all the over-the-counter drops
and sprays. They made some difference, but not enough. In the
end he realised that I was not an average case; and he prescribed
corticosteroid injections. In April each year, which would last
until July; then again in July. The treatment was effective on
the same day and was welcome.
That lasted for 11 years. In summer 1997 I had
had the July injection and was playing with the children in the
park. I began to limp. I didn't take much notice. But it went
on for two to three weeks and got worse. I went to the doctor
in August and he said wait, it might be a muscle sprain.
When it hadn't cleared by December we began
to realise that it was the side effects of the steroid treatment.
I was diagnosed with avascular necrosis. Nobody admits it. Nobody
accepts. They say the dose I was getting is not big enough to
cause it. But the accumulation must have been a factor.
Now I have avascular necrosis. Both my hip bones
are damaged. The right is at stage 5, total collapse and needs
replacement. And avascular necrosis is now present in the left
hip bone.
I was referred to the orthopaedic department
at a hospital in London in April 1998. I still go there. I am
putting the operation off as long as possible; I don't want to
have a series of hip replacements over the years. But it's serious
discomfort and limited coping.
Then came the problem with what to do about
the hay fever. They referred me to the Allergy Clinic at Addenbrooke's.
They gave me skin tests and began desensitisation. That was four
years ago. It seems to work. Yesterday (30 May) I sneezed once.
Today is fine. I've known nothing like it before.
I have friends from France. In 1992 they said
that desensitisation was commonly available in France; and they
were surprised that I couldn't get treatment. I wish it had been
available from day one. I have missed work and all this could
have been prevented."
Comment: Delayed referral for 14 years
despite desperate quality of life in the summer. Serious life-long
side-effects of inappropriate treatment and failure to refer to
an allergy clinic. Heavy costs to the patient and to the NHS.
9. Mrs Inchcliffe, aged 33.
Clinical summary: Latex, fruit and nut
anaphylaxis.
"I have atopic eczema and asthma. As I
grew up and it got worse I tried to explain what was happening.
Nothing really happened. Seven or eight years ago I was working
with self seal envelopes. I didn't then know I also have latex
allergy. My eyes and lips blew out. Then they took it seriously.
I was living in (the south of England) and was
referred to an allergy consultant; they were helpful to a degree;
but they wanted to find respiratory problems, and they asked about
wheeze; when I said no, but my lips were massive, they moved on.
Five years ago I was making satay sauce and
licked the spoon. My lips blew up and the next day I had hives.
I had read about Allergy UK and explained my situation to them.
We had moved to Essex, and I eventually pressed to get more advice.
What I had might not be full blown anaphylaxis but I didn't want
to wait to find out. Recently I have discovered I am allergic
to strawberries, so new things are being discovered all the time.
When I got to Addenbrooke's it was like a door
opening. They knew where I was coming from. I was not working
on my own anymore. When I last had a bad reaction they pinned
it down. Before they had tried to knock it out; but then you end
up with a tiny weenie amount of food to eat. Addenbrooke's have
given me a written emergency plan. It's on the seat of the car
in case of medical alert.
It's hard to live your life; I feel nervous
in day to day life. The GP was very good; he helped me about what
to do when things go wrong. He was the first person to take it
seriously; but I guess people don't know much about allergies.
Knowing what to do helps to suppress your panic."
Comment: Allergy is a multi-system disease.
Need to manage the whole disease, not just some of the symptoms.
10. Mrs Johnson spoke about her son, Andrew,
aged 13.
Clinical summary: Dairy produce and egg
anaphylaxis; allergic asthma and eczema.
"Andrew was very ill in his first few days
of life. The doctor recognised his eczema as atopic by eight weeks.
At three months he had a bad reaction to something in the Welcome
Pack, which contained baby rice. At one point epilepsy was diagnosed
(wrongly) because he was unconscious from a crumb of biscuit.
At seven months he was in hospital for three days, reacting to
something in a jar with milk in it. Almost immediately he had
another reaction and was in hospital for 10 days. We were then
fairly sure and were avoiding milk. He had another attack at about
two-and-a-half when he got hold of something; we were very lucky
that time.
Then we got a proper diagnosis of anaphylaxis;
and everybody got a bit of a fright. Then we had three to four
years living a nightmare; not knowing. The doctor (GP) was wonderful;
he came round and showed us what to do. Having the pens and the
protocol made the difference. If it's not clear what the problem
is then it's not safe.
I myself had anxiety attacks. I still do. It
changes life for the family. You have to be one step ahead and
know what you can do to save them. We had got milk out of the
house; but my daughter is now in puberty and she must have milk
and that brings a new risk back into the house.
People don't know the difference between allergy
and severe allergy. And you don't know how a reaction will develop.
They know the tingling in the throat and lips; but you can't cut
off all exposure and it's not clear what's going to happen next.
I would say that every year we need a trip to the hospital because
we are not sure.
But once you are in the system you are very
supported by it. Andrew now has a relatively normal life. He is
still bothered by it and has to protect himself; but he runs for
the county. Accurate diagnosis and having the Epipens and the
adrenaline puffer make the difference.
Nobody should underestimate the effect this
has had."
Comment: Patient made safe by identifying
then avoiding the allergic causes and with an emergency plan to
cope with reactions. Child given a nutritionally sound diet. Family
anxiety reduced.
11. Mr Kelsey, aged 36.
Clinical summary: Venom anaphylaxis switched
off by desensitisation (immunotherapy).
"I'm a bee keeper, with 200 hives. 90%
of my income comes from this source. It's very erratic, but I
might get stung three to four times a day.
Three years ago I was stung and within a minute
I was out of it, unconscious and throwing up. At the hospital
they let me out after three hours and lots of injections. Subsequently
my GP told me that I would have to give up bee keeping.
After some aggressive discussion he said that
there was this place, Addenbrooke's, and he would write if I was
willing to go on the course (desensitisation or immunotherapy
which switches off the allergic reaction). I got a place and was
treated. I'm as chuffed as buggery. I am two years into the course
and have injections every three months. There has been only one
mishap when I sat down with the Epipen, but I didn't have to use
it.
My biggest trouble was with the GP who said
there was no way I would get on the course because I was just
a bee-keeper."
Comment: Mr Kelsey is able to continue
with his livelihood.
12. Mrs Longworth, aged 60.
Clinical summary: Near fatal anaphylaxis
with cardiac arrest due to drugs used in general anaesthetic;
one year delay before allergy diagnosis (wrong referral initially,
then waiting time for allergy clinic appointment); now made safe
for future general anaesthetic.
This all began on 17 April last year. I had
never in my life before had an operation of any kind. But I tripped
and hurt my thumb when I was out with my son and his family. The
fracture clinic said I needed a small operation. They told me
there was a bed and I went down for the operation at 12 o'clock
the next day.
I woke up later that evening and I was hooked
up to everything. People were looking down at me. I couldn't make
out what they were saying. My family had been called and told
I had had "EMD". Everything had stopped. My whole body
had shut down. They told my son that they had got it going again
and everything was stable.
Next day I was still groggy. I remember a group
looking over me. They took the tube out of my neck and some things.
They were gradually taking me off the machines.
I was taken to a different ward. I was still
on oxygen. Then the anaesthetist came and said "you gave
us a scare yesterday". Well. I'm scared now. Nobody told
me they didn't know what had happened. They treated it like an
everyday occurrence. Nobody came and said they didn't know.
Then I had the operation on my thumb. They took
me to the same place. The same room. I was terrified.
When I was about to leave the hospital still
nobody had said. I told them I was worried about what is happening.
They said they would send somebody up. Then they told me to go.
I was completely drained. I felt like nothing. I was dismissed.
I wrote. I wasn't complaining. I was asking
to be told. I wanted them to know how I felt. They certainly got
the ball rolling. Complaints and Litigation wrote explaining what
had happened. They said they had explained when I came round.
I was in no fit state to recognise what they were saying. They
did not say that blood tests had been sent away for.
I was given tests to my heart. Three or more.
A 24-hour cardiogram; a transoesophageal echo. That was November
last year.
But in July the consultant anaesthetist rang
to say that the National Adverse Drug Advisory Service had sent
back results suggesting a reaction to the anaesthetic and saying
I needed skin testing for all the drugs that had been used on
that day. Nobody had said they had taken blood. Nobody said it
might be something in the anaesthetic.
I was nine months before I got to Addenbrooke's.
In that time I had a nice letter to carry around saying I had
cardiac arrest following anaesthesia and what drugs were implicated
and a bleep number.
In one way I felt relieved. All those weeks
I was wondering whether I was doing something. I just felt that
whatever I did could be the last time I did it. If somebody had
said before and they were going to try to get it sorted out. Now,
I think I could have had an accident and been on my own somewhere.
And never come out of it. Why can't they find out before?
When I got to Addenbrooke's it was amazing.
They did the tests; (the drug which caused the reaction) exploded
on my arm. It was like a door opening. I was treated like a human
being. They gave me confidence. They didn't dismiss me and showed
respect. Why wasn't I allowed to get there sooner? How easy it
could have been. I wouldn't have felt so alone. A year out of
my life.
Now I have a bracelet with all the details.
And a letter. I feel safe. And the MedicAlert people have all
the details on their computer. Two drugs I am allergic to, and
a list of anaesthetic drugs that it will be safe for me to have.
This will always be on my mind. If I hadn't
written, what would they have done? Are there other people like
me? What is happening to them? I still keep thinking things like
that."
Comment: This person was at recognisable,
but unaddressed, risk for one year.
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