Getting the most out of your GP if you're having a stem cell transplant

The average GP like me will have eight patients a year diagnosed with blood cancer. That includes people with leukaemia, lymphoma and myeloma. However, only around 2,000 people a year in the UK need a bone marrow or stem cell transplant to treat a blood cancer or blood disorder. So an experienced GP will know a bit about blood cancers, but is unlikely to know the details about post-transplant care.

But even though you’ve had blood cancer , a blood disorder or a transplant, the haematology or transplant specialists won’t necessarily be dealing with all your health problems. Your GP may not be an expert, but will still be your first port of call for many of your non-urgent needs. So if you need an annual flu jab, vaccinations, help with unrelated medical problems or psychological support, it pays to keep a good relationship going with your GP. They can be particularly good at accessing services, acting as your advocate within the NHS and interacting with you as the whole person you are.

However, people sometimes feel let down by their GP, and don’t get the service they want. Here are some tips for getting the best from your GP:

1. Know the system

All medical practices have websites with opening hours, contact details and how to book an appointment. If you have a problem getting access to a GP, ask to speak to the practice manager and explain your situation.

2. Don’t wait for an emergency

A neutropenic crisis is no time to get to know your GP. Book an appointment with them while you’re well to talk through your health needs, concerns, how to access urgent care if you need it, arrangements for out-of-hours care, whether your GP has all the information they need from the hospital about your condition, and when to go directly to your transplant team.

3. Carry your own information

Data-sharing in the NHS is not what it should be. It’s best to carry your own information when you go to the GP: a summary letter from the hospital about your condition, an up-to-date list of your meds, latest blood test results, drug allergies and other unrelated serious medical conditions. You may see a temporary or out-of-hours doctor who can’t access your notes, so it’s very handy to have these things with you.

4. When things aren’t working for you

If you don’t feel as if you’re being given enough support or help, ask for the practice manager or GP to phone you back. If that doesn’t work, you have some options. You can join the practice patient participation group if there is one, to work with the practice to improve things. Each practice has a complaints procedure if all else fails. Outside intervention (from Healthwatch, the local Clinical Commissioning Group or PALS) may also help. You could also call your hospital doctors or write to your GP. In most cases, though, if you can sit down with the GP and talk, you should be able to resolve matters.

5. Talk to others

Anthony Nolan offers support, and may be able to answer your concerns or point you in the right direction. You can also join their online patient community to connect with others going through the same thing.

6. Use the GP consultation efficiently

GPs only have 10 minutes available per patient consultation. You can request a double appointment for more time, but the system works best if you describe your symptoms clearly. Say when you last felt OK, what you’re feeling now, and what you’ve already tried. If you have a strong sense of the support you’d like, it’s best to say so. But if you have an open mind and are happy for the GP to advise, you may find the consultation goes better.

7. Avoid distracting extra information

It’s good to remind the GP of your diagnosis, but best to avoid throwing too much information in. Take them through the situation in a straightforward and clear way: for example, ‘You’ll remember I’ve been treated for AML and finished my chemo treatment a year ago. I’ve been very well and my haematologist said the last test showed I’m in remission. But now I’ve had a cough for one week, green phlegm, bit breathless. I’ve tried some cough medicine and paracetamol but it’s getting worse. I wondered whether you think I need antibiotics. I’m happy to take your advice.’

8. Check what to do if you get worse

GPs are usually good at ‘safety netting’; giving advice about what to do if things don¹t get better. But when you've had blood cancer or a blood disorder, it's quite natural and sensible to be concerned about your health. So it's fine to ask, ‘When should I expect to feel better?’ ‘What should I do if I don't feel better?’ and ‘Anything I should look out for?’ You should also feel free to write down the answers.

9. Give feedback

Surgeries welcome and need feedback to reinforce good practice, and change bad practice. If a GP, nurse or other member of staff is particularly helpful, let them and others know; it may boost that behaviour and nudge other staff members to be more like them. If a GP or practice nurse says something that you find upsetting, tell them. ‘When you said my hair had grown back more curly after chemo, I found it very personal and upsetting. But when you told me I looked well and healthy, that made me feel good.’

10. Educate others

You are an expert in your condition; the GP is not. But doctors and nurses are continually learning, and using their knowledge to help others and teach students. Sharing your knowledge doesn't  mean you are undermining their professionalism. You could point them in the direction of Anthony Nolan’s specialist resources about stem cell transplant. And if you can spare time to talk to students and trainee doctors, you will help them enormously. If your doctor doesn't seem interested in learning from you, consider changing GP. It's not a good sign!

If you've had a stem cell transplant, or you're looking for advice about a loved one, you can talk to others who've been through the same thing at our Anthony Nolan Transplant Community page.