15 pratical ways to get the most out of your GP

Budgets for HIV are at a standstill.  HIV clinics will have to look after more and more people with HIV, since the epidemic keeps growing in the UK,  with the same pot of money.

Because of this we will have to use GPs to look after our health needs which are not strictly HIV related.

I am preparing to deliver a  series o workshops on how to get the most from GPs  for people with HIV and  I am writing a handout with pratical ideas to help.

Here are some tips I gathered with suggestions from my colleagues at Pos UK.  I would love to hear from you if you have any special suggestions on how to get the most out of your  GP.

1) Know how to find your GP.  Visit NHS Choices at www.nhs.co.uk and search for a GP by your postcode.  Your HIV clinic may be able to help you find one. You must register with a GP in your catchment area, however within that you should have a choice of 2 or 3 GPs.

2) You can see the same GP every time. If there is a GP you feel most comfortable with in your surgery you can ask to see them. It may mean that you need to wait a bit longer.

3) Think about disclosing your HIV status to your GP. A GP is a doctor, and will be better able to look after your health if he or she knows all the facts.  This includes your HIV status.  If you don’t disclose there is a risk a GP can prescribe a medicine that interacts with your HIV treatments.  GPs and practice staff are bound by a confidentiality agreement; this includes keeping your HIV status a secret.  However, telling a GP can be a big step so talk it over with someone first, a friend, support worker, or speak to someone at Positively UK on 020 7713 0444.

4) Plan what you want to say and what you want to know before you        go…and write it down.

5) Write down what your GP tells you, so that you will remember later.

6) Be prepared to talk to your GP and explain your situation, especially if it’s a GP you haven’t seen before.  If a GP is to look after your health effectively, they need to know a bit about you.  Don’t get annoyed if they ask questions that you’ve told a GP previously.

7) Know your CD4 count and Viral Load. You could have a note-book where you keep track of all your figures

8 ) Know the name of the medications you are taking. Not only your HIV medications, but also any other ones you may be taking for other health problems. You can also write this in a special note-book where you keep your medical information.

9) Always be ready to ask questions when you are not clear about anything, or when you are unsure.

10) If you work full-time or are in employment, find out if they open after 6pm or on Saturdays and book appointments to suit you,

11) Ask your GP what you can do to enable him/her to provide the best care for you

12) Be open with your GP about what you like or what you are not so happy about the service – and offer any solutions! If you have an opportunity to do so.

13) If you are denied a service or even registration, always ask for a concrete reason why, this will not only give you a robust explanation, but it will also help you if you need to take any further action. A GP in your catchment area cannot refuse to take you on their register.  If they do you should contact your local PALS http://www.pals.nhs.uk or Positively UK 0207 7130444 or Positively UK who will help take your complaint forward.

14) If you are not happy with your current GP you can make a complaint and/or change it. If you need support to make  a complaint you can do it with the support of your local PALS (Patients, Advice and  Liaison, Service) http://www.pals.nhs.uk or Positively UK 0207 7130444

15) Always wear nice and clean nickers. You never know…

I will co-faciltate workshops with a GP and locations and dates are:

11th November River House, Hammersmith from 6 pm to 8 pm

22nd November Positively UK  Islington from 11 am to 1 pm

30th November Positively UK Islington from 6pm to 8pm

7th December River House from 10 am to 12 pm

You can book your place by calling Pos UK 0207 7130444

 

Knowledge is Power

I was started on HIV treatment in 1998, just over a year after my diagnosis. I was still in Italy at the time and finding it extremely hard to come to terms with my diagnosis.

Treatment was pretty new then and in Italy there wasn’t any information available for patients. All I knew about treatment was an article I found in a magazine I was reading in the dentist’s waiting room. The article was an interview with Magic Johnson on a new ‘miracle’ cure for HIV. There was a picture which showed 10 different bottles of drugs. I kept the article folded in a secret drawer and I would take it out from time to time and look  at it with a sense of disbelief. Was it true that HIV could be treated? Would I be given the drugs? The rumors from the hospital corridors were that only ‘deserving’ patients – patients who could be expected to be compliant with this very expensive and complex medical regimen- would have access to it.

My CD4 count was rapidly declining and so the doctor informed me that I had to start treatment as soon as possible.

I wasn’t asked how I felt about it, or given any explanation on what was the aim of treatment, if it would have worked for me and how. I had no knowledge about the virus. I vaguely understood that CD4 were important for the immune system and I had never even heard of Viral Load counts or anything else. Obviously I was very anxious about this mysterious treatment.  When I dared to ask my doctor about possible side effects he shouted at me, annoyed: “Just fucking [sic] take it!”

His tone and attitude were telling me (or at least this was what I heard in my head): “You probably deserve to have this awful illness, you should be grateful we even bother to give you medication. How do you dare ask all those questions?”

I don’t know if it was the nerves, or the appalling communication skills of my doctor, I felt really confused, when I arrived home with all those boxes of pills, which I couldn’t pronounce the names of.  I had to hide the pills in fear somebody from my family would see them.

Anyway, I started taking the medications. It was a lot of pills. When I went to the first check up appointment, after a couple of weeks, I was feeling really awful, nauseous, and tired.

I told the doctor: ” I feel terrible, it is a lot of pills: I take 3 of these 2 of those and then this one on an empty stomach and…”

The doctor looked at me horrified:

“You are doing it ALL wrong! You have mixed the pills up!”

He called other consultants into the room, sent for a nurse…everybody started running around looking really worried and freaked out.  Apparently I had overdosed some medications and not taken enough of another.  It was a surprise to everybody that I didn’t have a really severe reaction.

The doctor start shouting at me ‘What did you do???! This is really dangerous, you know!” He asked a nurse to take my blood in a hurry. I started crying, in fear, terrified. I hadn’t even told anybody about starting treatment. I couldn’t stop the tears flowing. While the nurse was taking the blood she was trying to console me, telling how much she wished they would find a cure. She seemed the only human person there. I couldn’t stop crying. The doctor started telling me: “But, what is the matter with you?! I will make a referral to psychiatric department.” Somehow I managed to tell him through the tears that I didn’t need to go to a psychiatrist:  I was just scared. He decided to stop the treatment for a few weeks, and when I was started again later on they wrote everything down on a piece of paper for me. This time I took them right. It was really hard, 18 pills a day, some with food some without food. I had to wake up in the middle of the night to swallow some of them. Nobody had explained anything about the importance of never missing doses, in order not to develop resistance to the medications. So I just took them when I could remember.Sometimes I would miss two or three doses in a row.

I had minor side effects mainly a tingling feeling in my mouth, always thirsty, my skin was dry and flaky, and my lips chopped, my toe nail started growing inwards.  But I was lucky, those were all minor and they stopped when I changed treatment.  I was just really fortunate that in spite of taking Indinavir and d4t I never had any Lipodystrophy, which would have stayed even whenI switched treatment.

When I moved to London the year after I was told for the first time that I had an undetectable Viral Load and what it meant. It seemed like a dream. I started to understand how treatment worked, reading magazines and booklets I found in hospital. By  going to support groups at Positively Women I learnt from others how to take the pills, little tricks not to forget doses. I also learnt it was my right to discuss my treatment with the doctor and negotiate something that suited my lifestyle better. Thanks to the support of treatment advocates I asked my new doctor to change my treatment. She was initially resistant: her point was my ‘numbers’ were OK. She told me:

“I can not change your treatment because it is working”

“It is working for who? “ I asked.

I explained that taking 18 pills a day was impossible and I kept missing doses. After a lot of insistence from me I was finally moved to Nevirapine and Combivir, 4 pills twice a day. It was an incredible change. At last I was able to go out without massive pill boxes rattling in my bag I stopped worrying about  constantly missing doses and feeling I was my worst enemy, because of my incapacity to take the treatment right. .

I have been on treatment for almost 12 years now, and I have also become a treatment advocate. I try to support other women to learn as much as possible about treatment, so that they can be in control of their health.

The treatment I am taking now is really working for me, it is only once a day, and I have absolutely no side effects. It is almost a miracle and I feel really lucky to have now a doctor who really listens to my concerns and always discuss all aspects of my care with me.

The saying: “Knowledge is power” is particularly appropriate applied to HIV. Learning more about the virus and what I can do to counter act it has really helped me in feeling I have some control over HIV. I know the medical system has not overtaken my body and my life.

Supporting others about gaining more understanding of HIV & ARVs has also helped me increasing my sell-esteem and feeling I am a valuable member of the community of PLHIV.

If you are interested in becoming a treatment advocate or just know more about treatment, go to IBase. They organize great trainings which are all run by people living with HIV who have developed an in-depth knowledge about treatment and also know how to make things easy for those of us who don’t feel too confident about reading medical research.

Even if you don’t want to become a treatment advocate, or you don’t live in the UK,   IBase has a great website were you can ask questions on line and download lots of booklets and resources, completely free for people with HIV.

What is Activism?

What is activism? Sometimes I am under the impression that many positive people think that to be an activist you need to go in the street with placards and banners shouting from the top of your voice. So often when I participate to support groups people tell me:” I am not  an activist…”, almost as if the word activist was an insult.

 Last week I went to the Annual General Meeting for a support group that is aimed to a mainly heterosexual crowd called ‘Str8 talk’.  I was pleasantly surprised when I walked in a crowded room with more then 30 people:  men, women, black white… a really nice mix.  

 During the meeting it was discussed the relationship between Str8 Talk and Terence Higgins Trust (THT) who has been hosting the group and the little funding they get from a contract with the Westminster Primary Care Trust. Many people who go to Str8 talk  were there because they were worried about some changes THT wanted the group to make, especially around collection of data for participants. I believe many people were worrying about THT taking too much control of the group. So they came to the meeting, to say what they wanted.

 It is funny but also there I heard a few people saying: ‘I am not an activist…’. But isn’t participating in a discussion on how you want the group that gives you support to be run activism?

 Wikipedia says:

 Activism can be described as involvement in action to bring about change, be it social, political, environmental, or other.

 So I will contradict many of you who take part in support groups: you are activists! – And I don’t mean to insult you.

 As a result of the discussion it was decided that Str8 Talk will be now hosted by Positively Women as an independent group. PW will not have a say on their policies however it will administrate their money from Westminster and offer some training to facilitators.

I think it is a very exciting turn. I was lamenting in one of my articles of the lack of involvement of straight men in HIV activism. I strongly hope that we are about to see a change and witness the birth of a stronger voice for all positive people in the UK.

Did you know?

My mind is still buzzing from all the information and discussion I participated in at Vienna.

Some random facts and numbers on the International AIDS Conference stuck on my mind:

The last conference in Mexico cost: 20.000.000 USD. My head is spinning thinking of all those dollar bills! How many shoes is that….? 

However in 2010 the budget will be 15% or 20% smaller. So ,really, we need to think hard how we can make less more.

More then 20.000 people participated to the last conference.

9ooo paying participants

8450 scholarships

The conference organizers still aim to offer the same level of scholarships, but also expand virtual access with more and more hubs, local computers connected to the conference, from which people can listen and participate.

There were 136 hubs which followed Mexico from around the world…but none in the UK,

Eastern Europe and Central Asia will be the focus of Vienna 2010. Unfortunately they couldn’t find a place with the suitable infrastructures in those areas that – if you don’t know- have had the fastest growing epidemic in the world in the past 10 years, mainly lead by injecting drug use. The epidemic has been made much worst by the lack of access to  ARVs and harm reduction (clean needles, methadone etc.).

In Mexico only 3% of participants came from Eastern Europe and Central Asia, so we hope that Vienna, sitting (nearly) at the doors of Russia will make it easier for PLHIV from those areas to participate.

For those of you who speak Russian you will be happy to know that all conference materials and translations will be offered also in Russian.

However, realistically it is not expected that more then 6% of participants will be from Eastern Europe and Central Asia.

I try to be optimistic about the impact that this will have, and for now  I feel it is great that at least there is an initial intention to have people who inject drugs at centre stage.

But I am also fully aware that the change we seek is an arduous task. All I can think of is the quote by Margaret Mead

  ‘Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has’