- If you have HIV and other health conditions you may find that health services are not as joined up as you’d like.
- There’s a lot you can do yourself to make things work more smoothly and to prevent problems.
- You can ask for one healthcare professional to co-ordinate your care across different services.
Many people living with HIV have other health conditions as well. You may need to see a number of different doctors and go to more than one clinic for your healthcare needs. For example, your HIV clinic may look after your HIV, while your GP may help with conditions such as high blood pressure or diabetes. You might also need to have hospital appointments with specialists for other conditions, such as arthritis or cancer.
This page gives general information about managing multiple chronic (long-term) health conditions. There are links to other factsheets you might find helpful at the end of the page.
Challenges of multiple health conditions
The healthcare system doesn’t always work smoothly for people with several health conditions. It can be tiring to manage appointments, medications and recommendations from different healthcare providers.
- Sometimes your doctor might not be sure what is causing your symptoms. Some GPs lack confidence in diagnosing symptoms in people with HIV, in case they could be caused by HIV.
- It might feel as if the system is set up to treat each condition or disease separately. The research and guidelines that doctors use to help them make decisions are usually based on people with just one condition rather than people with multiple conditions. This can sometimes leave doctors unsure of how best to treat you.
- It might not always be clear who is ‘in charge’ of your care.
- Rules about confidentiality and other practical issues might mean that information about you isn’t shared as much as you’d like between the different teams who are treating you.
Co-ordinating your care
These problems don’t just affect people with HIV. They affect lots of people with multiple health conditions, particularly older people.
In the UK, the National Institute for Health and Care Excellence (NICE) has guidance for people who are taking a lot of different medications or who are finding it hard to cope with multiple health problems. The guidance says that you can ask to have your healthcare reviewed so that it is better co-ordinated. You can ask any of your doctors to start this review.
The review should take into account what is most important to you. It should also include a review of all the medications you are taking. You and your doctor should then agree on a plan for how health care will be provided for you in the future. This could include naming a healthcare worker who will co-ordinate your care across different services and deal with any conflicting advice.
NICE doesn’t say who should take on this co-ordinating role, but you could ask your HIV doctor if your clinic can offer any support. There may be a community nurse or clinical nurse specialist who could help co-ordinate your care.
Your HIV clinic may suggest that this role is taken by someone with a broader medical background. This could be your GP or someone else working at the GP practice, such as a community matron or senior nurse. Another option could be a doctor or nurse who specialises in the care of older people (geriatric medicine). This is because they have experience in managing the care of people with multiple health conditions.
You may need to co-ordinate care yourself
You may find that care is not as co-ordinated as you’d like. And, while ideally a professional would oversee or co-ordinate all the care you receive, it may be hard to find someone willing or able to do this.
Realistically, you might need to be proactive. You may need to get quite involved in co-ordinating and organising your own health care. You might find yourself having to make sure that information is shared between your doctors, keeping track of the medications you’re taking and following up to check that things have been done.
This is easier for some people than for others. For example, it can be hard if you are not self-confident or when you’re feeling unwell or vulnerable. But there may be someone else, such as your partner, a family member, a close friend or a support worker, who could step in to do this for you. They will probably be pleased to be able to help you.
How do you manage multiple health conditions?
Here are ten tips to help you manage multiple health conditions.
1. Learn about your health conditions
Find as much information as you can about your conditions and your treatment options, as well as other ways you can take care of your health. Find out what help, support and services are available. Taking part in an ‘expert patient’ or ‘self-management’ programme may help you to do this. The more you know about your health, the more confident you will become and the easier it will be to manage your health.
2. Work out your priorities
Spend some time thinking about what matters most to you. This might be reducing symptoms or side effects, having more joined-up care, or reducing the number of appointments you have.
You may feel that there are one or two of your health conditions which need to be prioritised over other ones, if necessary. This might be the condition that is most complicated to manage or the one which could cause the most problems. It won’t necessarily be HIV, which for many people is quite straightforward to treat. Let your medical teams know what your priorities are.
3. Find a GP you can work with
Although it’s good to have a GP who is knowledgeable about HIV, it can be more important that they are good at communicating and co-ordinating with other healthcare providers. For example, finding a GP who pays attention to letters from your HIV clinic and is willing to discuss your care with your other doctors. There is more information about registering with a GP here.
When you call your GP surgery you can often ask for a specific doctor if there is one you’d prefer to speak to. If you need extra time to discuss complex issues, ask if you can have a longer appointment. Ask your GP if you can contact them by email or by phone in-between appointments.
4. Disclose your HIV status to your GP
Letting your GP and other healthcare providers know about having HIV will let them provide better medical care. It will mean they are aware of your HIV medication, which allows them to prescribe other medicines safely. They will also be able to consider HIV when they are screening for and managing other health conditions. Telling your GP that you have HIV should not negatively affect your care.
5. Ask lots of questions
There is no such thing as a silly question. Asking healthcare workers about the things you are unsure or worried about will help them understand what matters to you. Having a better understanding will help you play a more active role in your care and feel more in control.
Before an appointment, write down the points you want to talk about so that you don’t miss anything important. If you can’t understand what the doctor is saying, ask them to explain it another way. Feel free to take notes during your appointment.
6. Keep a file for your medical information
Communication between different healthcare providers may not always be as good as you’d like it to be. But if you have as much information as possible, you’ll be able to provide details when they’re needed.
You can ask to be sent copies of letters that doctors write about your care to your GP or to other professionals. It’s also worth keeping a list of all the medicines and treatments you take, so that when you’re prescribed a new medication you can ask about drug interactions. Put this information in a file or a folder, along with appointment letters and any test results you get.
Some hospitals have online platforms which allow you to see some of your medical records and show them to other healthcare professionals. There are also phone apps which allow you to store health information. Find a system which works for you.
7. Be aware of drug interactions
A drug interaction is when one medicine affects how another medicine works. For example, taken together, one medicine may increase the side effects of another medicine. The more medication you take, the bigger the risk of experiencing drug interactions and side effects.
Before starting a new medicine, always ask your doctor or pharmacist: Could the new medication interact with the other medications I am already taking? What side effects should I be aware of?
There’s more information on this on our page HIV treatment and drug-drug interactions.
8. Be persistent and follow things up
It’s often necessary to check on progress. This might be when you can expect to have test results, if your GP has made a referral, or if they’ve heard back from another provider.
You may need to push for what you need and keep asking until you get a response. Speak up if your treatment plans are too complex or too difficult to manage. Let somebody know if it seems the plans for your different health problems are not properly joined up.
9. Get support
As your health needs become more complex, you may need more help from friends, family, support groups and other people living with HIV. When things get difficult, it can be helpful to talk things through with other people. In particular, other people who are living with multiple health conditions or the same conditions as you may have experience of dealing with some of the problems you are facing. They might have ideas about how you could improve your care.
10. Take care of your mental and emotional health
Living with more than one health condition and managing multiple appointments and treatments can be hard work. Feeling unwell, being in pain or having to limit some of your day-to-day activities can bring you down.
Your emotional wellbeing needs looking after too. Continuing to spend time with friends and family, getting involved in activities you enjoy and being physically active are all good for your mental and emotional health. Professional help is available if you are feeling down or stressed.
If you’re living with multiple health conditions you might also find the following information helpful:
Thanks to Dr Tristan Barber, Garry Brough, Ben Cromarty, Paul Decle, Dr Stuart Flanagan, Jo Josh, Chris Sandford, Roy Trevelion and Dr Juliet Wright for their advice.