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.
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.