- If you have several 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 from occurring.
- You are entitled to ask for one healthcare professional to co-ordinate your care across different services.
Many people living with HIV have other health conditions as well as HIV. 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 cholesterol, high blood pressure or other issues. You might also need to see hospital-based specialists for treatment of other conditions, such as arthritis or cancer.
The healthcare system doesn’t always work smoothly for people with several health problems. It can be tiring to juggle several different doctors, appointments, medications and recommendations.
It may feel as if the system is set up to treat each condition or disease separately. The research studies and guidelines that doctors use to help them make decisions are usually based on people with a single condition (for example, high blood pressure) rather than people with several conditions (for example, high blood pressure, diabetes and HIV). This can sometimes leave doctors unsure of how best to treat you.
If you have symptoms, the complexity of the situation can lead to uncertainty about what is causing them. In particular, some GPs lack confidence diagnosing symptoms in people with HIV, in case they could be caused by HIV.
It may not be clear who is ‘in charge’ of your care. And due to confidentiality protections and bureaucratic issues, information may not always be shared as much as you’d like between the medical teams who are treating you.
These problems are not unique to HIV. They affect large numbers of people with multiple health conditions in the general population, particularly older people.
The National Institute for Health and Care Excellence (NICE) has issued guidance on this. NICE says that anyone taking a lot of different medications or who is finding it hard to cope with multiple health problems can ask to have their healthcare reviewed, so that it is better co-ordinated. You could ask any of your doctors to initiate this review.
The review should take full account of what is most important to you and include a review of all the medications you are taking. You and your doctor should agree a plan for how future healthcare will be provided. This could include naming a clinician who will co-ordinate your care across different healthcare services and deal with any conflicting advice.
NICE doesn’t say who should provide 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.
Nonetheless, your HIV clinic may suggest that it is done 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) – they have particular experience of managing the care of people with multiple health conditions.
You may need to co-ordinate care yourself
In the context of an over-stretched NHS, you may find that care is not as co-ordinated as you’d like. 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 take on this role.
Realistically, it may be down to you to be more proactive. You may need to get quite involved in co-ordinating and organising your healthcare. You might find yourself in a position where you have to make sure that information is shared between your doctors, keep track of the drugs you are taking and follow-up to check that things have been done.
This is easier for some people than for others. It can be hard if you are not self-confident or when you are 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.
Here are ten suggestions to help you manage multiple healthcare providers.
1. Learn about your health conditions
Be well informed about your conditions and their treatment. Gather as much information as you can about your treatment options and how 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 what your priorities are
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 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
You could ask other people who live locally about GPs they recommend. Although it’s good to have a GP who is knowledgeable about HIV, perhaps more important are your GP’s skills in communicating and co-ordinating with other healthcare providers – for example, paying attention to letters from your HIV clinic and being willing to discuss your care with your other doctors.
Reception staff may be able to help you get the most from your GP practice. While most have several GPs working there, tell the receptionist if there is one you’d prefer to usually see. 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, allowing them to prescribe other medicines safely. They will be able to take HIV into account when screening for and managing other health conditions. You should not experience any difference in the way you are treated after you disclose.
5. Ask lots of questions
There is no such thing as a stupid question. Asking healthcare workers about the things you are unsure or worried about will help them appreciate 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 raise 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 efficient as you’d like it to be. However, if you have as much information as possible at your fingertips, you’ll be better organised and able to pull out details when they are needed.
"The more you know about your health, the more confident you will become and the easier it will be to manage your health."
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 drugs you take, so that when you are 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 receive.
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 smartphone apps which allow you to store health information. Find a system which works for you.
7. Watch out for drug interactions
The more medication you take, the greater the risk of experiencing drug interactions and side-effects. 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.
Before starting a new medicine, always ask your doctor or pharmacist: Could the new drug interact with the other drugs I am already taking? What side-effects should I watch for?
There’s more information on this in another factsheet.
8. Be persistent and follow things up
It’s often necessary to check on progress – for example, to ask when you can expect to have test results, if the GP has made the referral they promised, or if they have heard back from another provider.
You may need to push for what you need and keep asking until you get a satisfactory response. Speak up if treatment plans are too complex or too difficult to manage, especially if it seems as if 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 physical health can affect your mental health and vice versa, so 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.
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.