Guest blog—the story that the House of Lords Select Committee on HIV won’t get to hear but should

14 Apr 2011 03:10

This is a guest blog from someone who was kind enough to write to me about the reality of his own care with HIV. This is the real story that the House of Lords Select Committee on HIV won’t get to hear but should. I asked for permission (and received it) to have it as a guest-blog for a number of reasons: here is a well-educated man who is highly competent; despite the public health messages, he got HIV; then he decided to make some change and ensure that he got well and stayed well from then on but entered the nightmarish reality of the NHS HIV ‘care’-bureaucracy: there he is assured that everything is done for his benefit when most clearly isn’t. It is the reality of administrator-centred and clinician-centred practice, a far cry from patient-centred service that results in real health. It is why the NHS doesn’t work and never can until it changes its model of practice; as the Bristol Inquiry showed, it has nothing to do with funding. And the more competent the advocate, the more resistant the providers—as I know full well myself. It’s a telling story and I’m going to Tweet it; if it means something to you, please re-Tweet it. Here’s his story and it really should be heard:

“I’ve found a place of understanding – I have found the Tuke Institute! I’ve been reading over the past few weeks the work and evidence presented to the Lords Select Committee on HIV. I then found your own written evidence by chance – it not having been published by the Lords.

I’ll provide a short bit of background so that what I go on to say is placed into context. I am a senior professional, I am educated past Masters level and I do have a sense of humour! I am also HIV-positive and I am now a patient who is struggling, a patient who is measured on a numbers basis and a patient who wants to engage but cannot seem to create that bind of trust, understanding and mutual respect with my “carers”. On reading your evidence [to the House of Lords], I had my light-bulb moment and I have begun to try and make sense of my place in the system of NHS care from which I cannot escape. I’ll try to write without emotion but this is difficult and, I suppose, I do write with a heavy heart.

I’m relatively new into this world of medical care and the clinical setting, where I’m expected to hand over my future health to a large NHS teaching hospital without question. However, I’m also a fast learner (possibly to my own detriment in this circumstances). I was diagnosed with HIV in early 2010. I was aware of the prevention messages and the messages that have been shaped since the late 90s that “it is better to know”, “prevention is better than cure” and “treatment is available for a near normal life-span”. I seized on these at the time of my unexpected diagnosis, entering care with an expectation that these seemingly open and welcoming messages would translate into a world of care and support where understanding of individuals and needs would be paramount. In the months which followed, however, I was unable to reconcile these messages with my experiences and the experiences of others which I have directly witnessed. More fool me. My now grateful understanding of those who have gone before me and the struggles of unsung heroes is something I cling to.

So where am I now? Well, I have a collection of letters from the Chief Executive of my local NHS Trust, covering apologies on subjects ranging from breach of confidentiality (as in unlawful ones), failure to follow processes (the Trust’s own), failure to provide adequate clinic care (missed diagnoses, treatment refusal, sub-optimal treatment prescription etc etc etc). I have doggedly pursued my good future health, perversely with an apparent effect on my health. I have had the meetings with Trust staff, I have had the haughty descriptions of how fantastic the service is and I have been given the explanations that every mistake which has been made, and every refusal to listen, has in someway been generated by the desire to only do the best for patients (yes, I still don’t get this). I am pushed to become institutionalised and I cannot do it.

I have questioned my own sanity, I have questioned my own right to care and I have wondered how it is so dreadfully possible to end up in a bloody fight. I have been the frustrated patient who is shut out because they raised their voice after being ignored and I have resolved to never be that patient again. I have been treated as the silly and petulant school-boy who cannot possibly have obtained a position in life where he has the capacity to question.

The situation of my care, and that of others, makes me sorry; sorry for myself and sorry for all of those who struggle to be heard. I am sorry for those individuals with chronic health conditions, many life threatening like mine, who want the best for themselves, but who fight a struggle every day to engage with their “care” providers in the same way they could expect to engage with any other service provider – be it their solicitor, their mechanic or their local baker.

Today, I write in the knowledge that I am now in a position where I am forced to communicate with my care providers through a human rights lawyer (I wish I was joking although I have managed to gain some objectivity and maybe a little bit of validation), where I live with the feeling that my personal health is damned if I stay within care and damned if I don’t.

Today I write in the knowledge that every professional skill I have learnt, and every piece of experience I have gained doggedly climbing to the top of a professional ladder, is being deployed and honed – and for what? To advocate for my own health and to advocate for the health of others. All of this within the system to try and effect change from within. I continue not for some sort of pursuit of martyrdom but for a pursuit of reconciliation and stepped change. I’m an individual, not a stereotype. I’m an educated individual, not a Google sponge. I’m an individual and I can be an equal – but who’s listening?

I look back on what I’ve written here. I question whether it is emotional, whether I am simply expecting too much and whether I am caught in a perpetual cycle of frustration and unfulfilled expectations (no matter how much they are adapted or lowered). I’m lucky that I can advocate for myself, I am lucky that I can take a deep breath on occasion and persevere to discuss my concerns and my needs as a patient in a modified manner in the hope that they can be understood by “professionals”. I am determined that they will hear me (without my shouting and whilst maintaining my dignity!) and if they don’t listen, at the very least I will keep going to my dying day knowing that I may have been heard. I know there are others who will not be heard and with that reason I keep going, and really for that reason, I’m contacting you now”.

And I’m glad he did. His is one story that speaks exactly to what the Tuke Institute is trying to do. There are many, many stories (and if you’ve not read the stories on “Patient Voices”——then I’d recommend them) but this one is about the struggle to get services that help you get well and stay well and, meanwhile, to be treated like a human being, with dignity and respect. How can a sick service really help a sick patient?

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