The past few weeks have been quite hectic and I have been meaning posting about this for ages but between the BHIVA conference The Women and Europe Advisory Board meetings, several deadlines and a high heels heavy bag carrying induced back ache, I have been kept away from blog writing against my will!
Anyway today was the last day to submit a response to the White Paper and I was able at the last-minute to put together the views of PozFem members we gathered at the last meeting in Manchester, on the 18th-19th September. Those views had already been included in a wider response by the Women and Health Equality Consortium, but I felt it was important that we did a response that was HIV specific.
Our PozFem meeting was the largest direct consultation of HIV+ women on national policy. Thirty five women from all over the UK, including Northern Ireland, Scotland, Wales and of course England from Newcastle to Cornwall. The age range was exceptional from 26 to 68. We covered almost all continents, with Africa the Caribbean, Asia and Europe represented.
One of the principal aspects of the White Paper is the centrality of patient involvement and patient choice: ” Nothing about me, Without me’.
PozFem members questioned how this applied to people living with HIV. We listed what we viewed as the biggest obstacles to accessing health services and our meaningful participation:
- Stigma – perceived or experienced
- Confidentiality: not being maintained with serious consequences for those who are ‘outed’
- Culture: Coming from cultures where health is not openly discussed
- Language: Especially for those who are not native speakers, or with low literacy levels, many policy papers and discussions are not easily accessible
- Other prejudices: Racism, drug use, ex offenders, homophobia
- Lack of knowledge of the system: leading to low rates of access to health care
- Lack of resources: The populations with HIV in Britain are often from marginalized communities unable to work or with no access to public funds.
- Lack of time especially for working women with caring responsibilities
A participant to our consultation meeting stated:
“I am HIV positive and live in a small village. I am scared that people will find out and this may also affect my children. How confidential are my notes? Can the nurse, or receptionist see them?… I always travel to the hospital for any health issue even if it’s over an hour drive… How am I expected to get involved?”
To support and increase involvement of PLHIV in Health Watch Boards and other participation systems we recommend that peer-support services which aim to develop confidence, voice, and advocacy skills of PLHIV are supported both at local and national level.
Changes in Commissioning
A fundamental change proposed by the White Paper is to abolish the Primary Care Trusts, to cut management costs, and move health commissioning in the hands of GP, who, it is assumed, have a better understanding of health needs at community level. To take up this role GP will gather together and form commissioning consortia.
We are concerned that GP’s consortia may not be well placed to commission HIV services and Sexual Health. Because of stigma and other prejudices (homophobia, racism, negative attitudes towards Injecting Drug Users and people who are or have been in prison, etc.). Many of us living with HIV have fears and difficulties disclosing HIV status to our GP and accessing health services at this level. PozFem is concerned that the complex social and health issues many of us face would not be understood and appropriately addressed at this level without a serious investment in training and confidence building for GP’s and patients.
We recommend that specialized HIV services continue being commissioned at regional/national level. This will allow better drug pricing, as well as retaining the expertise gained in the areas.
We also recommend that expertise around Sexual Health, HIV (especially testing) is developed at GP and GP consortium level, and that people living with HIV play an active role in delivering trainings and supporting this development.
We also recommend the creation of ‘Equality Champions’ roles to be involved at every level in the planned Health Watch Boards, Health and Well-Being Boards, National Public Health Services and Local Authorities.
To conclude I would like to include some quotes from PozFem members on some crucial aspect of providing health services for women living with HIV.
Peer Support Services:
“The Government needs to recognize that peer support is more than just ‘having a cup of tea in a church hall’. It has health outcomes: it improves adherence to medication (which saves a lot of money because people do not develop resistance and move to more expensive drugs), better mental health, coping strategies, disclosure, prevention, challenging stigma, patient engagement. We are the experts.”
Representation at all levels
“Not just at grassroots level. The Government needs to implement the Greater Involvement of People Living with HIV (GIPA) – as recommended by UNAIDS.”
“ This needs to happen throughout government sectors. Especially Health, Education and Employment.”
‘Decreasing stigma with an effective and pervasive anti stigma campaign will also have an effect on testing. Lots of people don’t test or test when they are really ill because of the stigma”
“We need to be really heard, and our views incorporated in policies. Not just ticking boxes. We would like to see what we do get in return for our participation in consultations. What’s in it for us?”