 photo: getty images |
In this new, fragmented world of HIV, there isn’t the community solidarity that used to support us. Community centres and support groups have lost funding and disappeared. People with HIV who have gone back to work, or never stopped, don’t have time to support each other, and snatch a few hours a month to see their clinic. The others, asylum seekers, benefit bunnies, people with problems ranging from treatment failure to depression, have been left to cope on their own.
There are currently, however, opportunities being created which aim to re-engage people as patients and health service users in their own future care and support.
It is becoming clear that people with HIV have a historical and time-limited opportunity to get involved in their own care, not as activists in the street, but centrally involved in decisions that will affect our health and the UK’s sexual health for years to come. In a situation where the UK’s sexual health is in crisis, positive people can be the ‘experts’ who ensure sex and HIV remain priorities.
This whole new range of structures within the NHS enshrines this idea that patients are the experts on living with their condition. The Commission for Patient and Public Involvement in Health (CPPIH) is setting up Patient Forums in every health trust. There is the new complaints procedure called the Patient Advice and Liaison Service (PALS). There is a course called the Expert Patients Programme that trains people to be advocates for others with their condition. And an increasing number of HIV clinics are seeing the formation of Clinic User Groups.
Two people who HAVE got involved are Ian Hayes and James Locke.
 Ian Hayes |
Self-management is about changing your relationship with your own health to one of active involvement. This includes involvement with your own medical team and participating in decisions that impact on your care.
I’ve been HIV positive for more than 20 years and have lived with haemophilia all my life. That’s a lot of experience.
By the mid 90s I’d left work and for the first time was feeling the disempowering effects of long-term illness. I lost confidence and began to feel I’d ceded control of what was left of my life to an ever-growing (and changing) group of clinicians.
Combination therapy began the process of change; my health improved and it spurred me to deal with the effects of years of self-neglect. If I was going to live then I’d need to be able to walk.
I also became conscious that a future meant I’d need something to do; the opportunity to get involved in self-management via the Haemophilia Society came at a perfect time for me. I became an enthusiast!
Since 1999 I’ve been involved in courses with people who have a whole range of conditions and I’ve learned that there’s little that is unique to mine. The support of some inspiring people I’ve met through self-management has taken me into a wide range of Patient Involvement activities.
Involvement of patients and the public in the whole range of decisions relating to health provision is the ‘big idea’ right now. It’s seen as key to the modernisation of health services. For the first time there is a statutory duty to consult. Being involved is vital for people like us: people whose quality of life depends on the services we receive.
In January, I joined the board of the Commission for Public and Patient Involvement in Health. A specific task of the Commission is to establish a system of Patients’ Forums throughout the NHS. Not surprisingly, I think people with HIV should be getting involved in these processes.
It’s fair to say that the best of our HIV services could be a model for the clinician-patient relationship. We have much to contribute to wider health services. Health organisations have a duty to involve people like us. It’s up to them to help you with anything that might prevent your involvement, including any need for confidentiality you may have.
There are many ways you can get involved right now:
 James Locke |
Originally given three years to live, I have now been living with HIV for 18 years.
Learning to live with HIV forces you to take a completely new look at life. Even now, it can be difficult to maintain a consistent outlook; living with the virus is like playing Snakes and Ladders. When you’re doing well on a certain treatment regime, it’s like an achievement, so if you get ill again, you feel you’re sliding back down that snake.
I have been on many different combinations of drugs through the years and in the mid-90s my HIV started to develop resistance. I also had disabling side effects. In 2001, I started the new drug T-20 (Fuzeon®). I realised that this was a last option and if I really wanted this therapy to work, I had to work with my health professionals to make it succeed.
I had to address my lifestyle. Was I drinking and/or smoking too much? Was I eating healthily and exercising properly? How could I deal with anger, fear and frustration? How could I plan for the future? Remain psychologically positive and stress-free? Even find a spiritual channel (or ‘window shop for heaven’, as I’ve heard it called)?
I learned of the Chronic Disease Self-management Course through volunteering with the Elton John Aids Foundation. Ian Hayes (left) invited me to attend a six-week, two-and-a-half hours a week course he was running for people with HIV at Positively Women.
At first, I was dubious. But what the course provided was the framework and structure to allow me to address the questions I’d already asked myself. Since it was owned and delivered by people living with a chronic illness, there was empathy within the group.
It soon became apparent that we had much knowledge and many experiences to share with one another. For example, I learnt some techniques on injecting my T-20 from a fellow participant who was living with haemophilia. Doctors are experts in treating diseases; but only the patient can become the expert in living with one.
Over the past two and half years of treatment and self-management I have come a long way both mentally and physically. And, as a tutor of the Chronic Disease Self-management course for my local primary care trust, I help other people with HIV and chronic illnesses build a life for themselves. It has opened a new life for me.
As anthropologist Margaret Mead once said: “Never doubt that a small group of thoughtful and committed citizens can change the world”. Indeed it’s the only thing that ever does!
 Hong Tan |
Hong Tan is the NHS Commissioner charged with getting patients involved in deciding future ‘specialised services’ in London, including HIV.
This work is based on The Living Well Programme in Hammersmith & Fulham and Waltham Forest and Redbridge that supports people to develop skills to live well with the virus. When the Expert Patients' Programme (EPP) course started, it complemented the Living Well Programme and led to the only HIV-specific EPP pilot site in the country, in Hammersmith & Fulham.
This in turn helped skilling-up some patients and public advocates to be involved in a formal Advisory Group of patients and patient advocates that is part of the commissioning Board.
“Five out of 25 people on our Advisory Group are people with HIV,” says Hong.
“The HIV Advisory Group pilots a new type of formal patient consultation. Specialised services doesn’t just mean HIV, but a whole range of complex conditions ranging from child disability to cancer.
“The whole point about the Advisory Group is to facilitate crossover communication between patients involved in very different areas of healthcare so they can learn from each other. For instance, we are going to visit a haemophilia comprehensive care centre to see we can learn from the way this complex condition is managed.
“I want to emphasise that people can become involved at ALL levels. Our strategy lays out three areas of involvement. Expert Patients, which is about getting skilled-up to represent yourself; Expert Communities, which is about training patient reps to become formal members of the commissioning structure; and Expert Staff, which is about training clinicians to deal with what can be - especially outside HIV - a very different doctor/patient relationship.”
Lots of people with HIV have gained from participating in the Expert Patients programme, but for many others the fear of disclosure is a big barrier to taking part. Living Well programmes, as another version of Expert Patients, target people with HIV in ways which should help get over the fear hurdle. Clinic User Groups are developing initiatives in parallel with these.
However, the difference between Clinic User Groups and Living Well or Expert Patients programmes is that the user group concept is a predominantly user-led and therefore more user-enriching experience. Whereas Expert Patients is a strictly prescribed programme which has to be delivered to the letter.
Clinic user groups also take place at the point where everybody is: at their clinic, and, while it is still an ‘opt in’ choice for the individual, it is one which is hopefully regarded as ‘safe’.
Once a user group and its members get past issues like the colour of the curtains, they develop the potential to deal with more complex issues at higher levels. In this way, people with HIV who face a whole raft of barriers to involvement in health, are developed and will hopefully start to fill the vacuum of involvement all the way up the ladder.
While there is policy commitment to involvement in both HIV and the wider NHS Public and Patient Involvement agenda, there is a vacuum of involvement and knowledge which we see as best filled from the bottom up.
The UKC would prefer to focus on the gap that exists rather than rely on the availability of a small number of people who are already equipped to take on the more strategic roles.
HOW TO GET INVOLVEDFor the Living Well Courses in London, contact: East London: Cathal Gallagher: 020 8509 2044, 020 8521 8631, For information on Expert Patient Programme courses running in your area, contact: the Long Term Medical Conditions Alliance on 020 7813 3637, info@lmca.org.uk If you are interested in becoming part of the London HIV Advisory Group,
contact: In Manchester, the Black Health Agency is recruiting interested people
from all communities to be on Patient Forums in the north of England.
Contact: For information on joining Patient Forums all over the UK, contact: the Commission for Patient and Public Involvement in Health, tel. 0845 120 7115. You can register your interest online at www.cppih.org |
