How to get the best from your PH clinic visits

Your consultations with your PH specialist team are very important and you should therefore try to make the best use of your time especially as you may have travelled a long distance to get there. You will have a number of tests. Make sure you give them all the information they need to help you. For example, for any new symptoms state when the problem started and the impact they are having on sleep, breathing, daily activities, appetite, family and work life etc.

Remember your PH team is on your side and is not there to judge you. If you feel too embarrassed to talk about any problems, write the details down and ask the doctor to read your notes first.  If you find that they are using medical jargon that you don't understand just say so and ask them to put it in more simple terms. If tests are being suggested, find out why you need them; if you're given prescription drugs, ask about possible risks or side effects.

The “Doctor Patient Partnership” offers the following advice to help you get the best out of your appointments:

Be Prepared:

• Make a list of any questions / problems you wish to discuss beforehand.
• Take a pen and paper as you may want to note down important points.
• Wear loose clothing if it's likely you will need to be examined.
• Be prepared to tell them of any non-prescription medicines or supplements you are taking.
• Take a relative or friend with you for support if it will make you feel more comfortable.

During The Appointment:

• Don't be afraid to ask questions.
• If you don't understand, ask them to repeat it or write it down.
• If you are prescribed a drug, make sure you know why it has been given to you, how long to take it for etc. Remember pharmacists are experts in medication and a very useful source of advice.
• Be direct. If you have a problem that you find embarrassing or difficult to talk about, don't leave it to the end of the appointment before mentioning it. Remember your problem is likely to a common one for your PH team, who are there to help you and won’t be embarrassed at all.
• If additional investigations are arranged for you then find out which department will be responsible and ensure you have a contact name and/or telephone number for that department.

Don’t be afraid to say how you really feel - after all, you are the only person who knows. There may be long periods of time between your appointments with your specialist and at these appointments there may be a wide range of things to consider and discuss.  Ensuring that you arrive on time and are well prepared for these appointments will ensure that both you and your PH specialist will make good use of the appointment.

If you keep a symptom and/or treatment diary that records how you feel, both physically and mentally, specific symptoms, any reaction to medications and problems you may have with any treatment, take this with you to your appointment.  This is a way of ensuring things don’t get forgotten or times confused and will, most likely, be beneficial both to you and your PH specialist team.

Remember that you can always contact someone from your PH team outside a normal clinic visit so make sure you have their contact details. In the first instance this will often be the specialist nurse.

What if things go wrong, how can you complain?

We all know that with the best will and efforts in the world, things can and do go wrong at times. This can be true in all aspects in our lives. In healthcare, as with most areas, it is best to try and deal with things as they happen and swiftly. There are procedures, set up by the NHS, for patients who have concerns or complaints about any aspect of their care.  All NHS Trusts, Primary Care Trusts, GPs, dentists, opticians and pharmacists have a complaints procedure.  Your GP should have a leaflet in the surgery on making a complaint and your local Primary Care Trust (PCT) can also advise you who to contact in order to make your complaint. 

The Complaints Process
In the first instance you should perhaps consider discussing your concerns with the specialist, doctor, nurse, receptionist or practice manager, etc. to see if they can be resolved. 

If you require some assistance in making a complaint you can contact your Patient Advisory Liaison Service (PALS), located at your hospital or Primary Care Trust. This is a new service that replaces the Community Health Councils and operates in every NHS Trust.  Their role includes supporting patients, carers and relatives, representing their views and resolving local difficulties on the spot. 

In addition, NHS Direct on 0845 46 47 will be able to provide you with information about how to complain about any aspect of your care.