Chapter four
YOU AND YOUR DOCTOR
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Chapter fourYOU AND YOUR DOCTOR |
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A different sort of illness
Why can diagnosis sometimes be such a problem?
Why do some doctors seem unhelpful?
Referral to a specialist
What can you and your healthcare team do? — 'Managing' the arthritis
Some tips on being an expert patient
Factfile
Finding a GP
Changing a GP
GP help away from home
Complaints
You and your rights
Going private
Who else might be in your healthcare team and what do they do?
Until arthritis rears its ugly head, for most of us visits to the doctor have probably been for a 'common' illness, like chickenpox or flu, or for something like a twisted ankle or broken bone. These problems usually have a fairly clearcut beginning, middle and end, plus clearcut symptoms and treatment. The doctor can easily tell you just what to do for the best, and roughly how long it'll take before you're back on form.
Arthritis, needless to say, just has to be different. Like you, we other young people with arthritis (YPAs) have been through fears and frustrations and anger too, because of its peculiarities. We've been puzzled by the wait for a definite diagnosis. Alarmed to learn there's no cure — yet. Discovered there's often a 'trial-and-error' approach to treatment; what works for you with your RA might be totally wrong for me and my body and my RA, though what I try next might be ideal, or possibly the fifth-next treatment… Baffled that the doctor wouldn't (because s/he simply couldn't) predict what was going to happen. Discovered that 'time and patience' form part of the prescription, just when you're impatient for results. And oh, the frustration at being told 'you'll just have to learn to live with it' — and asking why? how? Feeling alone and helpless. Yes, things can seem dismal, especially in the early days.
However there is a brighter side. Gloom does clear with time and experience, with information, and with help and support from other people. More, much more about all that later. I hope it might help if we look here at why the early days of the arthritis-doctor-you triangle can seem so frustrating. Otherwise it's easy to lose faith in your doctor and treatment.
Some of the problems are because of the peculiarities of the arthritis, some because of our reactions and difficulties in understanding what's going on, and because we haven't yet learnt the skills of being an 'expert patient'; other problems may be because of the doctor's inadequate knowledge of rheumatology, his or her inexperience at dealing with a chronic rather than acute illness, or simply personality problems.
Ideally you and your doctor need to establish a good working relationship, based on mutual respect, where each listens to the other and fully appreciates the special contribution each of you can make, as allies, to the fight against the arthritis. It's a partnership that might have to last a long time.
Some of us have been lucky enough to find a correct diagnosis and wonderfully supportive doctor right away. Others haven't. I've seen both extremes and some in between. The first doctor I saw with my aches and pains, when I was ten, diagnosed and treated me for flat feet. When that didn't help, he said the arches were too high. It wasn't until an agonising year later that I found another doctor who made a correct diagnosis, and then backed it up with effective treatment and support.
A few years later another doctor alienated me by saying 'Stop worrying about it. Go out and enjoy yourself' — instead of trying to understand and help me work through the physical and emotional agony I was suffering. Happily I now have a wonderful medical team in my GP, rheumatologist and orthopaedic surgeon. They can't give me a magic cure, but they do give me continuing support and understanding, and help me tackle specific problems as they crop up.
What we most certainly don't want, but sometimes get, alas, is a doctor like Liz W's*:
"He wanted to put me into a home as I was very dependent physically, but I'm blessed with fantastic parents. They wouldn't hear of it… He'd told me there was no future for me as a person in 'the outside world', well I couldn't accept that either so after a few days at home I contacted my local Disablement Resettlement Officer, he got me the interview for my job and the rest is past history. Two weeks before I started work I had to return to the doctor — when I told him of my plans he said 'you won't last a week'. — I've been there for 12 years — needless to say I didn't go to see him any more!"
Why can diagnosis sometimes be such a problem?
The trouble is that inflammatory arthritis takes so many different forms and even the same condition can start in many different ways. Maybe you were gradually aware of recurring aches and pains, and stiffness, in hands or feet or other joints. Or perhaps it started dramatically, taking you completely by surprise, so that several joints were suddenly acutely swollen and painful, and you could hardly move. Or it could have started with something completely different, like skin trouble, or a rash, as in psoriatic arthritis or lupus. With around 200 different rheumatic disorders, to say nothing of thousands of other conditions, the doctor's got plenty to choose from. Horribly frustrating for you, wondering what on earth's happening and just wanting to have it over and done with.
Marie Joseph, the writer, was 24 years old, with a small baby and a husband just back from the air force, when she found she had RA:
"My wrist grew steadily more painful, and I developed twinges in my knees, but refused to acknowledge them, working on the theory that the human body can only cope with one pain at a time. I found a way of fastening a nappy with my left hand and my teeth, and discovered that opening doors, turning on taps, holding a pencil, became virtually impossible…" (One Step at a Time, Arrow Books)
Corbet Woodall, former BBC TV newsreader, was 38, and on his second honeymoon when he noticed a "permanent nagging pain in my hands and feet". Soon his hands looked a "trifle swollen". Luckily he mentioned it to a doctor friend, who quickly worked out it was RA.
As a young man, Norman Cousins developed ankylosing spondylitis. It started with a slight fever, then rapidly worsening general feeling of achiness. Soon he found it difficult to move his neck, arms, hands, fingers, and legs, and at one point, his jaws were almost locked. The bones in his spine and almost every other part of his body felt "as though I had been run over by a truck." (Anatomy of an Illness, Bantam 1987)
Phil Smith, former Chairman of the '35 Group' for YPAs, had her first attack of RA when she was expecting her first baby:
"It started with aches and pains in one arm right at the end of the pregnancy. I came out of hospital two weeks after Christopher was born and a few days later I felt a bit fluey. I went to bed but when I tried to get up for his night feed I literally couldn't move."
In spite of her swollen joints, her doctor wasn't sure at first what was wrong with her.
"Then I went back and mentioned that my mother had arthritis, could I have it too? That was it. I was diagnosed at once. In a way I was lucky. Being diagnosed quickly meant I could start taking drugs to ease the inflammation and prevent the joints being permanently damaged." (In Woman magazine, 1984)
Diagnosis is based on masses of questions about your symptoms and medical history, a physical examination, plus special tests (eg blood tests to look at the Erythrocyte Sedimentation Rate (ESR), tests for the rheumatoid factor (see chapter 2), a urine test, maybe X-rays and goodness knows what else. Maddeningly, tests aren't always conclusive — for instance the rheumatoid factor isn't always present in the blood of someone with RA, and even if it is — it's also found in perfectly healthy individuals who never develop it. A strongly positive test, however, usually means active RA or lupus. Early AS pain down the legs may be misinterpreted by an inexperienced doctor as sciatica (a disc in the back pressing down on a nerve). So all in all, making a correct diagnosis isn't always straightforward, and may take time.
If, however, a form of chronic inflammatory arthritis is suspected, then you do need confirmation as quickly as possible, because "the earlier [you] can access treatment and support, the better are the chances of reducing the joint damage that can lead to long-term disability and loss of function" (Standards of care for people with inflammatory arthritis ARMA/the Arthritis and Musculoskeletal Alliance).
Why do some doctors seem unhelpful?
Alas, some doctors (not all by any means) don't always seem as helpful as we'd like. Let's look at some of the reasons why there may be problems. These help explain why we need to work at being as fully informed as possible about the disorder itself and ways of dealing with it. My feeling is that it helps everyone if we try to understand these problems rather than pretend they don't exist. Once we've got them out of the way we can look at our doctors' many undoubted talents!
One major problem is slowly disappearing, thanks to work by rheumatologists and ARC on improving the education and training of GPs. At medical school too many GPs are taught too little about rheumatology, despite the fact that "in aggregate approximately 23 per cent of patients seen by GPs have some sort of rheumatic condition." (ARC's Arthritis and Rheumatism in the Eighties). There is "insufficient priority given to training for health professionals involved in the care and support of people with inflammatory arthritis" ( ARMA's Standards of care for people with inflammatory arthritis, 2004). Rheumatology's a rapidly changing and highly complex area, and it's crucial for doctors to keep up to date.
I've mentioned this problem not to depress you, but so that, first, you're not surprised at finding it's sometimes up to you to put ideas into your doctor's head (but tactfully — s/he has spent years acquiring considerably more medical knowledge than most of us). Secondly, so that you might be inspired to add your voice to patient-pressure to get such problems sorted out. National provision of rheumatologists is still woefully poor. They're needed not just to treat patients, or carry out research, but to educate GPs and other healthcare professionals too.
Fortunately the picture is changing, and many doctors do make special efforts to increase their knowledge, through in-service courses and publications from ARC and other organisations. And GPs particularly interested in the rheumatic diseases have formed the Primary Care Rheumatology Society, which includes GP education amongst its aims.
GPs need training, too, in how best to help a patient deal generally with an unpredictable chronic illness. Some GPs already have these skills, others don't. When curing isn't yet possible, they need to expand their caring skills, and be fully aware of other sources of help (not just medical) to guide us to.
Other 'doctor problems' may simply be due to personality. There's the 'aloof and distant approach', where s/he identifies the illness, hands you a prescription, and more or less says go away and get on with learning to live with it. Or there's the doctor who knows his curable illnesses back-to-front but is flummoxed at having to deal with an 'incurable' illness. S/he may be very caring, but upset at not knowing how to help, or may not want to admit to uncertainty in case you lose confidence in him/her. S/he ends up telling you little or nothing at all, and you may feel angry and upset as a result.
Not nearly as helpful as the doctor who's honest about problems and what s/he doesn't know, but who reassures you there are ways of 'managing' the arthritis, and reassures you of unfailing support as you learn to outwit it. Different approaches work for different people at different times, and your doctor-patient partnership will need to keep working on this, together.
Good communication's essential, with each of you respecting and listening to the other. Fortunately it's now being realised that much more time should be spent on teaching medical students 'communicating skills'. The health section of the BBC website includes tips on improving the doctor-patient communication process, and other helpful information, and there's also a booklet called You and Your Doctor, produced by the charity the Patients Association, downloadable from their website.
Referral to a specialist
Some people are treated entirely by their GP; others will be referred to a hospital rheumatologist, nearby if you're lucky, or you might have to travel quite a way. GPs build up expertise in many areas, but it's the rheumatologist who has the most thorough and up-to-date knowledge of the more complicated rheumatic disorders.
These usually require a team approach. You and your GP start the ball rolling, drawing upon other experts as required, eg rheumatologist, nurse (Rheumatology Nurse Specialist if possible), physio, OT, social worker, podiatrist or chiropodist. The team spreads outside the medical profession to include family and friends, and perhaps a self-help and patient support group.
Referral to a specialist has to be through your GP (even if you want private treatment from that specialist). If your GP doesn't refer you, ask what s/he thinks of the idea. Try something like 'I'd be interested in having a specialist opinion…' If you know where the nearest rheumatology clinic is, you could add 'I believe there's a rheumatology clinic at… Could you please refer me there?' Find out where from the internet (eg NHS website), or reference books in your library, or from Arthritis Care. Check how easy or difficult it might be for you to get there, but don't let difficulties put you off: many can be overcome.
If your GP won't agree to refer you, then ask (politely) why not. If chronic inflamatory arthritis is suspected, you do now have the support of ARMA's Standards of care for people with inflammatory arthritis; Standard 4 says:
"All people with suspected inflammatory arthritis should be seen by a specialist in rheumatology within 12 weeks of referral from their GP, to confirm diagnosis and enable prompt and effective treatment. ['within 6 weeks' should be aimed for] Children and young people in whom juvenile idiopathic arthritis (JIA) is suspected should be seen within a maximum of 4 weeks."
You could discuss the GP's reluctance to refer with, perhaps, someone on the freephone helpline of Arthritis Care or the National Rheumatoid Arthritis Society, or other patient support group. With the more complicated disorders you need specialist advice as early as possible. So much can be done, especially if they're caught early and treated with up-to-date expertise. I'd rather be referred to a specialist who says there's little or nothing after all to worry about, than endure the possibly long-term serious effects of delayed or refused referral.
Referral might mean just a one-off visit with advice from the specialist to your GP on how best to continue treating you. Or specialist and GP might decide to work together, each keeping the other informed about progress. A common misunderstanding is that the specialist is superior to the GP. In fact the GP doesn't hand over total responsibility for you to the specialist. S/he's just asking for supplementary support and know-how. Specialists have great expertise, but in a comparatively narrow area. It's still your GP who oversees your care, and holds full details of your medical history. Your GP can act as an interpreter, explaining to you what the specialist has recommended, and discussing in more detail the advantages and disadvantages of proposed forms of treatment in the context of your particular circumstances, which s/he may know more about than the specialist.
Referral for other services, eg physiotherapy, occupational therapy, is also best done through your GP or rheumatologist, though referral isn't always compulsory (more later).
What you probably want first is relief from pain and stiffness, and help to get going again. And information — what exactly have you got, will it get worse, how long will it last, what's the cure, what can your doctor do for you, what shouldn't you do, and what should you do for the best?
Treatment for inflammatory arthritis means much more than a prescription for drugs, and 'management' is a better way of describing what happens. The best approach for each person varies according to diagnosis, severity of symptoms, previous treatment, drug history, age, particular personal circumstances, and how things progress. A trial-and-error approach may be necessary, especially with drugs — you and your healthcare team may need to try out several different ones before finding out what's best for you.
At the centre of your management team is you, and you need to find out (with help where necessary) how best to help yourself, eg how and when your drugs should be taken and what they're expected to do, how best to balance rest and exercise, how to avoid joint-straining habits and activities, how to adjust your lifestyle to cope, etc.
Yes, arthritis is manageable. But what about that bleak word 'incurable', thrown at you? True, the cause and cure of most rheumatic disorders like RA and AS aren't yet known, so there's no 'instant cure' yet, but:
You may find it helpful to look at ARMA's Standards of care for people with inflammatory arthritis with its recommendations to help us lead independent lives and reach our full health potential. Lupus/SLE, scleroderma, and Sjögren's are covered by ARMA's Standards for Connective Tissue Diseases.
Generally speaking, managing the arthritis will involve one or more of the following (plus other more specific bits and pieces where necessary):
Medical and practical management:
Non-medical, emotional and psychological aspects:
"Medicine has other important functions which go beyond mere therapeutic intervention. It is a source of knowledge… It is also a source of hope… [Patients] looked to medicine and its practitioners for social and psychological support and, arguably, this was its most significant contribution… It appeared that much was to be gained when doctors maintained an interest in their clinical condition and their personal and social affairs, if only because they felt valued as a result." (Disability and Disadvantage, Routledge/Tavistock, 1983)
Remember you're in partnership with your doctor. S/he's the medical expert, but you, the patient, can do a lot to help make the most of that expertise.
Getting organised
Get two large cardboard wallets from a stationer, or use a couple of large envelopes or cardboard boxes or plastic carrier bags. The first is for your personal 'Medikit', the second is for your 'Infokit' (see chapter 15). Keep in your Medikit things like:
Homework: preparing for visits to the doctor
Worries are understandable. Will you get there on time and in reasonable shape? Will you remember the questions you want to ask? Do some seem too stupid to ask? What questions will the doctor ask you? Will there be time for everything? Will it all be too rushed and feel a let-down afterwards? A little homework beforehand will help cut down on nervousness and forgetfulness. It'll help increase mutual respect, too.
Don't forget appointments! After each visit note the next right away in a diary and on a wall calendar, hanging up where you can check it regularly (by the phone?). If you can't keep an appointment phone well in advance to explain. If you have problems getting to appointments, or find they're too frequent, or whatever, talk to the doctor or nurse and see if between you you can solve the problem. Write a letter if that's easier.
Keep your personal medical notebook always handy to jot things down between visits. For instance, questions about your drugs, about something you've read and don't understand, about things you find you can't do, or are specially worrying you. Sort them into some sort of order just before the appointment. Don't produce a vast encyclopaedia! But a few careful, concise questions/thoughts/worries/ideas can help both you and your doctor.
If you're going to have lots to talk about you could try asking well beforehand if it's possible to have a 'double appointment'; or, a trick I occasionally find helpful, write a letter to the doctor at least a week beforehand, putting some of the more important points (keep a copy to take with you as a reminder). For instance I needed my doctor's considered opinion on my mobility allowance application, and on an ankle op, so I wrote a letter first. It helped me get my thoughts in order and gave the doctor time to prepare a helpful response.
Prepare beforehand for doctor's questions that crop up regularly. For instance, s/he will ask: 'How are you?' you: 'Well, I've been feeling reasonably OK most of the time, except for two particular problems — my left wrist and right ankle.' Prepare for pain/ stiffness questions. For instance, where do you feel the pain? When? Early morning? After exercise? After rest? How long does it last? What sort of pain — stabbing? dull ache? Does it radiate/spread out? What seems to make it better or worse? Some doctors and patients develop their own pain measurement system, eg using a scale of 1 to 10, where 10 is utterly unbearable. and 1 is minor discomfort. I think and talk about pain in 'noise' terms, so a minor pain is a 'whisper' or 'quiet', getting 'louder' until it screams.
Jot down any seemingly insoluble non-medical worries too, even if you've no idea whether or how the doctor might help, eg 'I'd really like to have a baby, doctor, but my husband just doesn't see how we could cope' or 'My wife keeps nagging me to help around the house; — she doesn't seem to understand how stiff I am and what an effort everything is.' Step number one in finding a solution is to talk about it. If the doctor doesn't have an answer, s/he might know someone else who can help.
Bear in mind that contact with a GP or specialist doesn't have to be limited to face-to-face appointments only. For people like us with mobility problems and a possibly long-term disorder, sensible use of letters, telephone, even emails, is a useful occasional alternative. By telephoning, I don't mean ringing up and demanding to speak to the doctor there and then, but a phone call to say something like "I'm worried about 'x' (eg side-effect with a drug) — could the doctor possibly phone me back when s/he's got a moment?" Some surgeries have special times for dealing with non-urgent problems over the phone.
Actual visits
Early visits concentrate on diagnosis, explanations, and advice on treatment. At follow-up visits your doctor will check how you're getting on, and probably continue to look at specific joints, may measure particular movements, grip strength, ask what you can/can't do, ask about morning stiffness, stiffness at other times, swelling, tenderness, pain, fatigue, your weight, how you're getting on with drugs/other treatment/aids/splints, arrange tests (blood, urine, etc). Don't forget early referral to a physio and OT is a good idea.
Getting there Plan beforehand how best to get there, and allow plenty of time. Wear easy-to-manage clothes in case the doctor needs to examine you or wants a sleeve rolled up for a blood-test. Take any gadgets you might need. There's usually someone around to help but I always like to take my own stocking puller-on and folding long-reach gadget, for instance. Don't forget your medical notebook and questions. You might want to take a friend or relative along for practical or moral support; your partner, maybe, to help him/her better understand what's happening. It might help oil any squeaky wheels in your relationship.
How you feel during the visit If you feel nervous, why not tell the doctor, so s/he understands? Your homework will help too. Don't feel embarrassed about checking your notes in front of the doctor, or jotting down what s/he says. Your doctor makes notes; why not you too? Do you feel inhibited if students are present? You can ask beforehand to see the doctor alone, if you prefer, or, during the consultation, ask 'could I talk to you privately for a couple of minutes?'
Or do you get bolshy and exasperated, rather than nervous? Do try to keep things polite and friendly and avoid grumbling accusingly at the doctor! Explain how you feel and ask for support. You can express misery without blaming the doctor for it! Doctors are human too, and more likely to respond to encouragement than criticism. Remind yourself you're in partnership together, against the arthritis. Try using the word 'we' as a simple reminder to both of you — for instance, 'is there something else we could try, doctor?', instead of confronting the doctor with a 'what are you going to do about things, doc?' approach.
If you've an unhelpful doctor, count to ten under your breath and vow to give him/her a fair chance while you (subtly) re-educate him/her. Re-read my earlier notes explaining some reasons for apparent unhelpfulness. In the last resort you could change your GP.If your specialist is unhelpful, discuss the difficulties with your GP.
Questions and answers Be honest in your answers to the doctor's questions! So often we YPAs 'put on a brave face' to avoid boring other people with our problems, or whatever. This can become such a habit that we forget to drop the mask at the doctor's. Don't feel too proud or too brave or whatever to say how you really feel behind the mask.
Remember, doctors aren't mind-readers. And they're unlikely to know your case history back to front. So, for instance, if you've developed a slight rash, and think 'oh, it's not worth mentioning unless the doctor says something' you're wrong! — It's up to you to mention it. There are 1001 reasons why s/he might not ask the right question or notice anything, but it could still be important. When you see a different doctor from normal, it's especially important not to assume s/he's read your case history and knows all your allergies/peculiarities/drugs you're on/whether you're pregnant/whatever.
Keep time limits in mind, but don't let that stop you bringing up important points. Bring up the most important ones first, using your notebook as a reminder if necessary. For instance, when s/he says 'How are you?', you might reply 'Not too good, doctor. There are three main things I'd like to mention to you…'
Get worries into the open — is it infectious? hereditary? what about having children? could you end up in a wheelchair? what could you do to help yourself? etc. Bear in mind that since there's still a lot to be discovered about rheumatic disorders there may not always be an answer, or the explanation might be really complex (some of the finer points of the immune system, for instance, are thoroughly mind-boggling), Or you might need to look elsewhere for the answer. But, I repeat, don't hesitate to ask. Apart from anything else, it helps the doctor understand more about you. You won't necessarily get many answers at any one time, not just because time's limited, but also because the amount of information anyone can comfortably absorb at any one time is limited too. ARC publications will answer some questions, and help you prepare others for the doctor. The Rheumatology Nurse Specialist can be wonderfully helpful, too, if you're lucky enough to have one.
If you're puzzled by something the doctor says, do ask, and ask again if necessary. Ways I use to help myself listen and understand are repeating it back to the doctor slightly differently, asking a question, or jotting a note down, especially about medication. The doctor can check you've noted the drug name and dosage correctly, or could even write it for you.
If you don't agree about something or have doubts, say so, tactfully. Apparently much treatment is misused or simply not used, because patients either don't understand or disagree, silently, with it. Talking about your doubts or difficulties might mean your partnership decides to try something else instead, or perhaps postpone the treatment for a while, like Phil:
"[My consultant] has been really great, understanding why I have refused to go in for treatment, and even gave me tea with sympathy when I needed it just recently. Anyway, we've come to a compromise and I've agreed to go in at the end of the week."
Doubts or queries about drugs are common, so do talk them through. Be sure to understand what they've been prescribed for. Stiffness? Pain? Inflammation control? What dosage, how often to take them, before or after meals, whether there are any special side-effects you should look out for, effect on daily routine, etc? Before you leave summarise out loud what plans you've made together, about drugs, treatment, etc, and what to do if a problem comes back, or gets worse.
After a visit
Make a note of your next appointment in your diary and on your calendar. Think about what happened and get the important things clear in your mind. Work out how to fit advised changes into your life — eg fitting in a midday rest period, cutting down on particular physical activities. Work out how best to remember to take your drugs and how best to fit in regular prescribed exercises. You might think of questions about the treatment prescribed and wish you'd asked the doctor in the surgery. If so, leave a phone message for him/her or e-mail or write.
Give any treatment a fair trial. Remember, a lot of arthritis treatment involves a sort of trial-and-error approach. Maybe one drug and your stomach don't get on together. If so, OK, the doctor can then suggest another drug, or maybe the same drug in a different form.
The health services always seem to be changing! For up-to-date information you could try one or more of the following:
Finding a GP
Lists of local GPs are available in public libraries, the Citizens Advice Bureaux (CABs) or your local council (listed in the telephone directory). Many strategic health authorities and primary care trusts (PCTs) also have websites where you can find out about doctors in your area. Or you can key your postcode into
the NHS Direct website. Ask friends and neighbours for personal views, too, but allow for any possible bias!
Changing a GP
Look at the instructions on your NHS medical card. You can register with another GP without any special formalities, but check first that the new doctor will accept you as a patient. Take your NHS card along to the surgery of the new doctor and the administration staff there should be able to sort out any formalities for you. Bear in mind that it may take a while for your medical records to be transferred (by the health authority). Though it's not compulsory to ask or inform your old GP, it's polite and helpful, if you can let him/her know.
GP help away from home
If you're ill while away from home or have no permanent doctor, you can register with a practice as a temporary patient for up to 14 days. For more information see the NHS website
Complaints
Procedures are complicated. You could try asking your local PALS (Patient Advice and Liaison Service) office for advice. NHS Direct on 0845 46 47 can tell you how to contact PALS. Two websites you might find helpful: www.bbc.co.uk/health and Department of Health, click on A-Z, then Complaints. There are time limits, so don't delay seeking advice if you feel you do need to complain.
You and your rights
There's a summary of NHS patient rights on the
advice guide website of the Citizen's Advice Bureau.
One right we sometimes forget — You can choose not to have a particular treatment or examination (with a few exceptions like infectious illnesses). You're entitled to think for a while about what's recommended before deciding, or might want to discuss it futher with your GP. Remember too you can ask your doctor whether s/he can speed things up if you've been waiting ages for a hospital appointment: s/he may or may not be successful.
If you have been recommended for anti-TNFa biologics, and meet the NICE criteria guidance, yet have then been refused access to the drugs due to lack of funding, NRAS want to hear from you:
"Please write to us, email us or call us if you have been put forward by your consultant for anti-TNF treatment but have been told you cannot have it at the moment due to funding restrictions. We can write to the Chief Executive of the PCT (Primary Care Trust), your local MP and other key organisations to remind them of their legal obligation to provide treatment in accordance with NICE guidance. At some point, someone being denied treatment is going to go to judicial review and when that happens they will have the support of NRAS and many frustrated and dedicated rheumatology health professionals who simply want to provide the best care for their patients."
Look too at eMaxHealth's article ('Arthritis Pain Treatment') reporting on research in the journal Rheumatology (October 2006) into this postcode lottery scandal, and quoting Dr Lesley Kay, a member of the British Society for Rheumatology Biologics Register (BSRBR) management committee:
"The BSRBR urges the Government and primary care trusts to put an end to this patently unfair situation, which is in direct contravention of government policy. The postcode lottery continues to operate, even though NICE aims to stop this happening. It's unfair on patients with these devastating, painful and unglamorous conditions to be forced to take a low priority and to be deprived of this very successful treatment."
"Randomised clinical trials have shown anti-TNF therapy is highly effective in the treatment of rheumatoid arthritis, juvenile idiopathic arthritis (JIA), psoriatic arthritis (PsA) and ankylosing spondylitis (AS). Not only can it arrest the progress of the disease, preventing deformity, but also patients report considerable improvements in symptoms such as joint pain, swelling, mobility and fatigue, and often say that the treatment has made them feel well in themselves for the first time in many years." ('Patients' perceptions of treatment with anti-TNF therapy for rheumatoid arthritis: a qualitative study' by N.J. Marshall, G. Wilson, K. Lapworth and L.J. Kay, Rheumatology 2004)
Going private
If you want private medical care from a specialist, you still need to be referred by a GP (NHS GP or private GP — it doesn't matter which). Some GPs may charge for making a private referral. The Citizens Advice Bureau have a
factsheet Private health treatment you can download. Look too at the section 'Going private' in chapter 8.
Specialists Here are the names of some specialists you may come across, and what they specialise in: orthopaedic surgeon (bones and joints), dermatologist (skin problems including psoriasis, scleroderma, lupus rashes), ophthalmologist (eyes), gastroenterologist (digestive system and intestines), cardiologist (heart conditions), urologist (bladder, kidneys, urinary system), haematologist (blood problems), chest specialist, radiologist (supervises taking of X-rays (by a radiographer) and reports on results).
Nurses Some nurses work in hospitals, others are community nurses. To qualify, they take either diploma (DipHE Nursing) or degree courses, lasting three or four years, at an institute of higher education. The course is 50% theory and 50% practical. Working alongside nurses are Health Care Assistants (HCAs), sometimes known as Nursing Auxiliaries or Auxiliary Nurses. HCA duties include washing, dressing and feeding, toileting, helping people to mobilise, bed making, and generally assisting with patients' overall comfort.
Some nurses specialise in rheumatology nursing, and you may be lucky enough to have access to a rheumatology clinical nurse specialist. The Royal College of Nursing has a Rheumatology Nursing Forum. There's a free leaflet The Rheumatology Nurse Specialist on ARC's website.
Referral to allied health professionals
It isn't always essential to be referred to these services by your GP or hospital specialist, though it's wise to try that route first, so that important details of your medical history can be passed on. Unfortunately, even with self-referral, there may still be a waiting list for appointments or treatment. Some allied health professionals (AHPs) can make home visits, and some are in private practice.
The UK-wide Health Professions Council (HPC) sets standards of professional training, performance and conduct for thirteen professions of AHPs. HPC's register and website , tel: 020 7582 0866, tells you what to look for to ensure that a particular health professional has qualifications that meet HPC standards, and gives contact details for individual professional bodies.
Physiotherapists Physios work in hospitals and the community, usually receiving patients by referral, though you can refer yourself directly too. Physios assess, treat, and rehabilitate patients by physical 'non-invasive methods' ie not using surgery or drugs. They're trained in manipulation, massage, movement, exercise, heat and cold treatments (eg wax and ice), electrotherapy, infra-red and ultra-sound, hydrotherapy, massage and traction, etc.
Only state-registered chartered physiotherapists (MCSP or SRP after their name) are allowed to work in the NHS. If you want to see a physio for private treatment, make sure they are chartered and registered. More helpful information on the website of the Chartered Society of Physiotherapy, tel: 020 7306 6666. (More about physios in chapter 6)
Occupational therapists (OTs) OTs are employed by hospitals and social services departments. You can refer yourself to the social services OT or be referred by GP or consultant. Make sure they have the initials DipCOT and/or SROT after their names. More information and downloadable leaflets on the 'How can OT help me?' public section of the British Association/College of Occupational Therapists website, tel: 020 7450 2316.
OTs are trained to help limit the effects of disability and promote independence in all aspects of daily life. They assess and help patients sort out functional and practical problems at home, at work, in personal care, mobility, and leisure activities. They can advise on joint care and self-management, aids and adaptations, and can also liaise with other departments, eg about meals-on-wheels, home helps, if necessary. The OTs' three year full-time training includes medical, psychiatric, psychological and social subjects. (More about OTs in chapter 6)
Dietitians They usually work in hospitals, advising catering staff, doctors and patients on appropriate diets, eg for overweight patients, diabetic patients. In some areas GPs can refer patients directly to a local hospital dietitian. More information on the website of the British Dietetic Association, tel: 0121 200 8080.
Chiropodists/Podiatrists They deal with foot problems. Treatment of painful corns, advice on shoe choice, posture, etc, can make a real difference to some pain and mobility problems. Chiropodists/podiatrists can be seen with or without referral from your doctor, but be sure you see only a practitioner registered with the Health Professions Council. The initials SRCh, for instance, mean a chiropodist has completed a three year full-time course of training and is professionally approved by the NHS. Several professional bodies approved by the Health Professions Council are listed on the HPC website, and can be contacted for more information, including the Society of Chiropodists & Podiatrists, the British Chiropody & Podiatry Association, and others.
Home visits can be arranged if you're housebound. Only some people are eligible for free NHS chiropody treatment, including people under 18, people with diabetes, pregnant women and registered disabled people. In some areas, other people with a long-term illness may also qualify.
Subjects covered in chiropodists' training include theoretical and practical chiropody, anatomy, dermatology, life sciences, medicine, microbiology, pathology, pharmacology, surgery, local analgesia and skin surgery, appliance construction and shoe fitting.
Prosthetists and Orthotists Prosthetists and orthotists are responsible for all aspects of supplying prostheses and orthoses for patients. A prosthesis is a device that replaces a missing body part. An orthosis is a device fitted to an existing body part in order to improve its function or reduce pain. They assess, fit and supply people with surgical splints, shoes and other appliances. You need to be referred by your GP and consultant. More information on the website of the British Association of Prosthetists & Orthotists
Social workers Those working in local social services departments deal with community care services, help with financial or domestic problems, and liaise with other services and organisations. You can refer yourself for this help. More information on the websites of the British Association of Social Workers and the General Social Care Council
Pharmacists Make use of their drugs/medication expertise, as well as the doctor's, on questions like when best to take medicine, use ointment, possible side-effects, drug interactions with other medication, advice on drug storage, interactions with drinking and driving, etc. If you need a prescription in an emergency, and a doctor isn't available, a pharmacist is allowed to supply it, but only if it's a medicine previously prescribed for you. Even then s/he may only provide a limited amount until the doctor can be contacted.
The Royal Pharmaceutical Society of Great Britain (RPSGB) is the professional and regulatory body for pharmacists in England, Scotland and Wales.