Power to the Patient: An interview with patient representative Chris Sandford

By Kailey Nolan, i-sense

 

Chris Sandford is a Patient Representative at the Bloomsbury Clinic. The patient representatives offer peer support, advice, advocacy and group support to HIV patients, helping to improve their confidence and enabling them to live more positively with their diagnosis. In this interview, Chris talks to i-sense's Kailey Nolan about the positive work of the Bloomsbury Clinic, why more needs to be done to support people diagnosed with HIV and what he thinks the future should be for HIV testing in the UK.

 

Could we start with finding out a little bit more about the work of the Bloomsbury Clinic?

The Bloomsbury Clinic is one of the biggest HIV clinics in the UK, with just over 4,400 patients. We see patients about 3-4 times a year and, due to the fact they need to remain on medication permanently, they are very much our patients for life. The medication has given these patients a future, a normal lifespan, so the clinic on the whole is a very positive place.

The clinic takes on a very holistic approach. We know how important it is to keep people engaged in care, in terms of medication, but also for other issues in their life, which may affect their psychological and physiological wellbeing.

Our patients are not just numbers, they’re individuals and we want to help them as much as possible. An extreme example was a refugee patient we had, whose son was lost in the refugee camp system for 4 years. With the help of their consultant, we were able to find and repatriate him so he could rejoin his mother. Everyone matters.

What have been some of the other positive outcomes of this holistic approach?

We do a lot of in-house work, like newly diagnosed courses, as I am passionate about early intervention. If someone newly diagnosed is given the right information, then you can avoid a lot of psychological issues and ensure people are kept linked into treatment and care. I have been a patient here for 30 years and I believe that it is this holistic approach that gives us such amazing outcomes.

We have incredibly healthy patients from all backgrounds in terms of ethnic minorities, sexual orientation, socioeconomic status, etc., and they all seem to be doing well. 97% of our patients on medication are undetectable – which means the virus is suppressed to such an extent that they are no longer infectious.  This far exceeds the figure for the rest of the UK and the US. We also have a large antenatal clinic for HIV positive Mums and we have not had one HIV-positive baby for over 10 years.

That’s extremely impressive. How important is patient engagement in informing and improving patient care?

Extremely important. We have found that if a patient has a good relationship with their clinic and doctor, they actually feel better. If a clinic engages someone in their care and educates them about their virus, it enables patients to make an informed choice and helps them help themselves. So informed patient engagement is crucial, especially for a disease that has had 30 years of negative media coverage.

Most people still, when they are diagnosed, think they are going to die. Talking to patients on my courses, many people still have suicidal thoughts and this is in the 21st century. There are so many myths and misinformation out there and, as a result, HIV is still highly stigmatised. It is not just about patient engagement, but changing perceptions and challenging ignorance so when patients are newly diagnosed, they have accurate, balanced information.

What do you think are the major barriers to testing?

Getting people to test is a real issue. I personally feel there is a need for a government-led, national campaign saying clearly that this could affect you. We need to reach society on a much wider scale and stop targeting certain groups, like homosexual men or African women for example, because this makes people think it’s not their concern. They won’t get tested and then we have skewed HIV rates.

I also strongly believe that normalising testing is key. HIV affects everyone so taking a test shouldn’t be a question, it should be part of general practice – whenever you have your blood taken HIV testing should be included - whether in hospital, when you join a GP surgery or attend a clinic. This would help normalise and de-stigmatise the disease.

Campaigns in general need to focus on the positive. Rather than telling people not to participate in certain activities, they need to say get tested, because the earlier you get tested the more likely you are to lead a normal, healthy life.

Home testing kits for HIV were legalised in the UK in April 2014. What impact do you think this will have on testing in the UK?

My main concern about home testing is that you have to have clear pathways. What do you do if you get a positive result when you’re on your own at home at unsociable hours? This could have a catastrophic psychological impact. This is where the greater public health campaign I mentioned, to make sure people know HIV does not mean they are going to die, would help.

The mobile tests i-sense are developing provide an opportunity to connect automatically with a doctor if you receive a positive diagnosis, but this is still not the same as face-to-face. It would certainly help on a national, public health level, but the pathways need to be simplified in order to protect newly diagnosed patients. 

I also think the ideal kit would test for a range of potential sexually transmitted diseases, including HIV. This would help to normalise HIV testing as part of the standard sexual health process. 

Here at i-sense, we believe that there is a great opportunity to use mobile phones for the detection of HIV at point of care. What do you think are the potential benefits and challenges of this? 

People are extremely skeptical about electronic data or totally ignorant about the impact it can have. Due to the stigma associated with HIV, I think there would be some reluctance to use a test if people knew their data was going into a system somewhere, no matter how anonymised. I think there is a generation gap also, where younger people are more likely to use and trust technology as a testing device. 

Where I think these devices would have the most impact is in developing countries where there is a high rate of HIV, like South Africa. Like you mentioned before, in some parts of the world there are more people with phones than access to clean water. That’s a staggering statistic and it’s important to leverage on these technologies in order to help fill in the gaps and help combat the disease.

I’m not saying we shouldn’t have the technology here in the UK; I’m very excited by it but I’m also concerned about the psychological impact and follow-up with patients that I touched on before. If you do receive a positive diagnosis on your phone, you shouldn’t even need to dial a number. Something like a talking head should come up instantly letting you know that you are not going to die, you are going to be treated and cared for and you will live a normal, long and healthy life.

How far do you think we’ve come in treating HIV patients and what are the next steps?

When HIV was first diagnosed, nobody had any answers - when I was diagnosed 30 years ago, I was given 2 years to live. Then with the introduction of combination therapy, people were no longer dying from the disease, which is great, but then a lot of the supportive charities and drop-in centres closed. I sometimes still find myself now needing to remind doctors that there are people involved in all of this and, while we may not have as many medical issues, there are still a lot of psychological problems to consider.

HIV has fallen off the agenda in Britain; it hasn’t turned out to be the epidemic everyone feared and people, certainly government, view it as under control. However, it is only because of our excellent medical care in the UK that this is the case.

The UK has some of the best HIV care, treatment and outcomes in the world. We have to maintain this level of care, improve testing uptake, increase early intervention and psycho-social support to ensure it does not become the epidemic it could be. 

For more information on the services and support offered by the Bloomsbury Patient Network click here.

The Bloomsbury Clinic at Mortimer Market Centre, in central London, offers free, confidential treatment and care for people with HIV. It provides a comprehensive range of HIV services and treatments, and its skilled professionals include HIV consultants, specialist pharmacists and nurses, health advisers and psychologists. 

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