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”—http://www.patientvoices.org.uk/about.htm—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?

07 Jan 2011 09:45

Nick Clegg has announced that he is to introduce real changes into England’s libel laws—a long overdue move in the effort to shuck vested interests out of their protective shells and make English society a more equal and open place (http://bit.ly/eeOp5n). Currently, it takes a very brave person to speak up and risk a libel suit—and there are very few of us who can afford that. Yet it’s very important for the public to be able to speak up and say when a particular individual is not doing their job—especially when that job is in public services and paid for by the public.

It may be a good step towards making the English public, at least, far less timid about speaking up and telling it as they see it. I don’t care for unnecessary confrontation, but coming back to Britain after so many years in the USA showed me that people here are afraid to speak up. Criticism is indirect, ‘diplomatic’, or avoidant and all too often ineffectual. Little changes until people are pushed to unnecessary extremes to be heard and then we get shouting in the clinics—whereupon the complainant is ejected and everything continues badly as before. It is simply oppressive. Whistleblowing is punished, even when it is killing people—we only need to look back at the Bristol Inquiry and the current Stafford Inquiry to see that.

A while ago, I mooted the idea of a well-structured, scientifically based review-website to assess the quality of clinicians’ performance in helping people get well during treatment for an illness. It would show how health-effective a clinician’s practice is and it is more accurate and proactive than simply making a body-count of the dead as we do now. This idea effectively was shut down because I was told “we can’t say that Dr. X has been ineffectual publicly, because it will cause a libel suit”—and this is when Dr. X has been paid by public taxes to provide a service to the public in order to help the public get well from illness. This reality is one of the reasons why clinicians have been untouchable and have had no greater motivation than their own integrity to do a good job. When a clinician has integrity—and we know many who have—she does her best to make sure she is doing a good job; but I also know many clinicians who really can’t be bothered, who see themselves as the victims of a difficult system and weep all the way to the bank as they cash their annual salary of £150,000. Furthermore, what is a good job to a surgeon can be quite different from what it is to a patient: “the surgery was successful but the patient died”. The patient might have reviewed the adequacy of the surgeon’s performance as other than ‘successful’ if he’d lived.

If the NHS or any medical system is to become patient-centred, it has to mean making medical services about helping people become well long-term. How each clinician does that needs to be reviewed publicly. But it’s not a case of using the ludicrous 5-star system of recent times or the current fad for measuring ‘patient satisfaction’; it needs to be a thorough system that looks at all the variables that go into helping people get well. I’ve researched this for a number of years and it’s a complex, scientific issue. It can be done and the public has an essential role in such a review. We need to be able to say it publicly when things are less than adequate, without fear of a lawsuit for libel. Nick Clegg’s initiative is a very, very welcome step in the right direction. Let’s hope he succeeds.

28 Dec 2010 10:02
Every month or so I get a copy of Buddhadharma, a magazine that re-connects me with my spiritual values and helps me both feel good and refocus on doing something positive for society. This week it is a reminder of the spirit of Christmas and a refreshing source of support in the times when the Tuke Institute’s challenges form a seemingly impassable mountain. The current edition is about the historical oppression of women within Buddhism and how things have started to change since Buddhism developed a foothold in the West. This has allowed a less polluted form of religious practice to emerge from the tension between spiritual integrity and religious tradition, often returning to a more authentic spiritual practice that existed before religious ‘professionals’ and their vested interests developed.
It reminded me of the same problems in medicine between the professionalisation of Western male physicians, where they became the sole owners of the concept of medicine, and the fact that, for many thousands of years, medicine was defined instead by the needs of the ill person. It is no co-incidence that women were kept out of both religion and modern medicine for so long and that, in medicine, it took some strong women to re-introduce basic humanity into its practice, even though they had to call it by a different name: ‘nursing’. But as nursing became professionalised (though still subordinate to male medicine), it too became heartless: one only has to read Denton Welch’s “A Voice Through A Cloud” to remember what it used to be like with fierce and unkind nurses. While nursing has always been the most forward-looking of the medical professions and is far more in line today with what people need and require, medicine in all its forms struggles to remain humane as it becomes increasingly professionalised and distant from the reality of illness. Humane medicine is civilising and empathetic, it relates to the experience of illness, and thereby finds out what a particular person needs in order to get well. Inhumane medicine makes you sick, in all senses of the phrase. 


The balkanisation of medicine into ‘medicine proper’ (i.e., what Western physicians provide) and ‘ancillary’ services, such as nursing, is still one of the greatest failings of modern medicine; it is also one of the biggest obstacles to focusing effectively on the needs of the ill. As a person with chronic illness myself, I define ‘medicine’ as whatever I need to get and remain well, and this is sometimes quite distinct from anything the most caring physician can provide. It is a pity that such a simple truth has been marginalised by the vested interests of providers, interests that are so woven into the fabric of society that it takes ‘outsiders’ to show where the problems lie; ‘insiders’ can’t see it themselves, because they have no alternative perspective until they become so sick themselves they have to question what they know. The very fact that the ill are considered ‘outsiders’ in medicine identifies the core problem and if there is one over-arching rationale for the participation of ‘outsiders’ in medicine, it is to help ‘insiders’ remember their purpose. Otherwise, we get bureaucratic bean-counters causing multiple deaths (as at Stafford Hospital) or narcissistic clinicians causing multiple deaths (as at Bristol). Both have forgotten why they are there.

Over recent years, I have felt an increasing need to bridge this divide between providers and their purpose (patients)—not least because of the dreadful and inhumane ‘care’ I suffered myself as a patient in the NHS. It is the reason why I focused on getting other people like me—clinicians, scientists, and other providers who also have chronic illnesses themselves—to help find a way to bridge that divide through the work of the Tuke Institute; after all, we have to do this every day in our own lives and it helps us to not forget why we do what we do. Bridging this divide requires the active participation of patients, something that is already forcing medicine to change, but medical providers are fiercely resisting that change, protecting their turf from ‘outsiders’—often in the name of professionalism. Again, they have forgotten why their professions exist in the first place. Medical professionals need ‘outsiders’ to remember why they are there and, just as women have helped Buddhism regain its authentic spiritual values in religious practice, so patients can help medicine regain its authentic humane values in professional practice. Only a medical  professionalism imbued with a real understanding of illness will be able to help the ill get fully well.