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Select Committee on Health Minutes of Evidence


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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