Monday, 24 October 2016

PrEP or When Healthcare Isn’t Fair

We have a drug that is 86% effective at preventing a certain health condition (1), at its best the seasonal flu vaccination is only 50% effective (2), yet the NHS will not provide it on prescription. The argument is that it’s too expensive (3). If this drug prevented heart diseases or diabetes we would jump on it, but this drug is PrEP (pre-exposure prophylaxis) and prevents HIV, which that still carries a heavy stigma in this country.

NHS England argued that PrEP should be funded by Local Authorities because it is a preventative treatment (Since 2010 Local Authorities have had the responsibility for public health) but Local Authorities argued that they couldn’t afford it, and it being a medication NHS England should fund it. Deadlock, and people who need PrEP cannot get it on prescription.

At the beginning of August The National Aids Trust won a landmark victory (4). The High Court ruled that England NHS can fund PrEP, not that they should fund it only that they can. It took a court case to decide this, to say whose responsibility it is to fund PrEP. It took the shame of a charity having to take NHS England to court to obtain this ruling, like cowboy builders being taken to court to be made to do the actual job they were meant to do. But NHS England has already said it will appeal the decision, saying that PrEP is too expensive to fund. This still leaves people needing it unable to get it on an NHS prescription.

How expensive is PrEP? A Tory Lord has already claimed that it is too expensive for the NHS to fund (15).

A private prescription for PrEP costs £400 per month (5) (this includes the doctor’s
prescription for it because it is only available via a prescription), without the private doctor’s fee it can cost as little as £45 per month (16). Evolocumab and Alirocumab, anti-cholesterol medication (also preventative medications) cost the same as PrEP (6). The lifetime cost for treating one person who is HIV+ is about £380,000 (7) and there are 103,700 living with HIV in this country (8), with 6,000 new people diagnosed each year (9). Even if no new people were diagnosed with HIV and the cost of antiretroviral treatment didn’t increase, that is still a cost of £39,406,000,0000. How can PrEP be more expensive than treatment of HIV? Also HIV can severally impact on a person’s quality of life (14)

What this does highlight is the poor state of funding of the NHS.  Since 2010 the NHS has seen severe cuts to its funding (10). In 2009, under Gordon Brown, NHS funding had increased to 8.8% of GDP, in line with most other EU countries at the time. Since then, since the Conservatives came into Government, NHS funding has rapidly decreased, it has now fell far behind the other EU countries. We currently spend 7.3 of GDP on health (compared to 10.1% in the other EU countries) and there is no sign of any real increase in funding from Theresa May’s government.

PrEP is an easy target for not funding because HIV still carries such a stigma in our society.
When the High Court ruling was announced the Daily Mail ran a headline calling PrEP a “lifestyle drug” (11). Botox and hair growth supplements are lifestyle drugs. PrEP is a proven and effective preventative drug, yet the stigma of HIV runs too deep to allow us to have a reason debate about PrEP. A Nursing Standard Twitter poll found that 54%, of people who responded, thought PrEP should be self-funded, 42% thought it should be funded by the NHS and 4% thought local councils should fund it (12). This was a poll of nurses, people who should know the benefit of preventative treatment, but the stigma of HIV has a long shadow. It seems as if we can never escape the prejudice, homophobia and scaremongering of the 1980s when HIV is ever mentioned (13).

This all leaves the people who need PrEP the most out on a limb. Some people are going to different Sex Health Clinics or A&E Departments, saying they have just had unprotected sex with someone who is HIV+ and asking for PrEP, called “clinic hopping” (17). Clinicians are, at present, only allowed to prescribe PrEP as treatment for exposure to HIV, it is a single months course only. But is no way to take PrEP as an effective preventative. There is no one monitoring the person’s health, regular blood tests, monitoring any side-effects, helping with compliance. And what if they can’t find another clinic for their next month’s supply? It can be bought privately, but it needs a doctor’s prescription for each month’s supply, it can’t be bought over-the-counter like paracetamol. A private doctor’s fee can be £55 for 15 minutes, up to £145 for an hour (18), and this doesn’t include blood tests and follow-up monitoring. Also this doesn’t guarantee that the doctor is familiar with PrEP and knows how to prescribe it safely? A full private medical service for regular PrEP (including monitoring, screening, support, regular and appropriate blood tests) can cost £400 a month (5). This is well out of the reach of a lot of people and this isn’t available across the country.

We need more preventative treatments, with the cost and demand for healthcare spiraling ever upwards we cannot afford to simply just treat the symptoms of long term health conditions. We need to prevent people developing these conditions, and calling them “lifestyle factors” and blaming the person who developing the condition is no answer. We need to move to a preventative medical model, not just a treatment medical model. But all the prejudice and stigma that quickly rose to the surface with PrEP shows that our society hears them over medical evidence.

The NHS cannot afford to fund PrEP yet this isn’t the headlines that PrEP generates.

Drew Payne

Wednesday, 22 June 2016

Ten Commitments of Nursing or Just Another Paper Exercise?

Simply write a list of “commitments”, ensure as many people as you can reads them, then sit back and feel as if you have done something positive.

Jane Cummings, the Chief Nursing Officer for England, has had written and is now publicising her Ten Commitments of Nursing. They promise that nurses will promote: public health, nurse leadership, informed patient choices, high value care, partnerships in care, colleagues’ concerns, good quality healthcare research, the right to education and training for nurses, the right staffing ratios, and champion the use of technology.  (Read the full version here). These are Jane Cummings’ strategy to improve the quality of nursing care in England. But how helpful are they?

These ten commitments will not make any difference because they are only words on a page, there is no backing of resources or money behind them.

Nursing faces one of its biggest crises of morale in decades. Nurses are over-worked, under staffed, under paid and under trained; and yet this government expects us to do more and more with less recourses. We are now expected to roll-out a full seven day NHS with no extra funding for the increased demand.

Since 2010, we’ve seen a huge decrease in the number of nurses in the NHS (1), as they leave to work for agencies with better pay or leave the NHS altogether; we’ve seen an increase in our workload, with no extra resources, we’ve suffered a cut in our real pay (0% pay rises since 2010 when David Cameron entered 10 Downing Street) (2), budgets for training have been slashed as NHS funding is cut in real terms  (3), and now student nurses are to be robbed of their bursaries (4).

These ten commitments won’t stop another Mid Staffs scandal (5) happening again when the strain on the NHS is forcing us ever nearer another one. Why isn’t Jane Cummings doing something about this? The real problems of the NHS revolve around lack of resources (6), not nurses being without Ten Commitments to quote, why isn’t Jane Cummings speaking out on this until she goes horse?

Many Trusts have Mission Statements, some of them have spent thousands of pounds to create their Mission Statements, all these Trusts will have had to spend a lot of resources and staff hours on agreeing these Mission Statements and publishing them throughout their organisation. But how many of these Mission Statements on their own have improved patient care and increased staff’s clinical skills and care? I suspect the answer is less than one. To improve patient care takes time, skill and resources, not just words on paper.

Even if all NHS Trusts adopted these Ten Comments where are the resources to implement them? Many, if not all of them, require a solid commitment of resources and money behind them to make them work, yet all Jane Cummings seems to be backing them with words.

I’m so busy at work that I regularly leave an hour late and I have forgotten the last time I didn’t work through my lunch break. I don’t have the time to do these ten commitments as well, but I don’t remember her asking me about them.

Drew Payne

Wednesday, 15 June 2016

Homophobia Kills

I’m not homophobic, these are my personal views.”

I’m not homophobic, it’s the way things are.”

I’m not homophobic, it’s the word of God, it’s what God says.”

I’m not homophobic, it’s just banter. Get a life!”

I have forgotten all the excuses I have heard for homophobia over the years. It still the acceptable prejudice, wrapped up as personal beliefs or jokes, yet when you challenge it you are the one to blame.

On Saturday night (11/06/16), in Orlando, we saw an obscene act of homophobia. An armed man walked into the Pulse Nightclub, a Gay club, and opened fire with an automatic rifle, killing 49 people and injuring over 50. It was one of the worst mass shootings in American history and it was aimed at the LGBT Community. The shooter didn’t go into a random bar, he didn’t open fire at public place, he deliberately targeted a LGBT nightclub and opened fire at the people trapped inside.

We have already heard tales of heroism from that night (1) but barely have the victims been identified than the bigots started circling (2). Donald Trump, Sarah Palin and Ann Coulter have all tried to score political points from this tragedy, ignoring the pain of these lost lives. Even the Leave EU campaign has tried to do the same (3). Politicians and Commentators trying to score points off the back of this tragedy is distasteful enough but to also they deny the sexuality of the victims is disgusting.

We have seen outright, gloating hatred by homophobic bigots, a Turkish newspaper headline screamed ‘50 perverts killed’ (4). But homophobia is also becoming more subtle and underhand. A BBC news reporter (1 O’clock news on 14/06/16) described the victims as “party boys out for a good time”, as if their lives were of less value. On Sunday night (12/06/16) we have the spectre of Sky News trying to hetrosexualise the victims, denying their sexuality and that they were attacked because of their sexuality (5). The gay journalist Owen Jones, who was a guest on the Sky News review program, was so disgusted at this underhand homophobia of Mark Longhurst and Julia Hartley-Brewer (the presenter and other guest) that he walked off the program (6).

We are finding out more and more details about the shooter (7) but this man directly attacked a gay club. His father has claimed that the shooter acted because he was disgusted at seeing two men kissing (8), but his father has also said that it is God who will “punish” LGBT people (9). Homophobia is a big part of this tragedy and to deny it is as equally homophobic.

Homophobia isn’t just someone’s personal views, someone’s religious believes or just banter, it is an extreme prejudice that can lead to violence and killing. I have repeatedly seen this throughout my life, I still vividly remember the Soho bombing in 1999 that ripped apart the Admiral Duncan pub, and repeatedly I have heard people deny the homophobia behind these actions. To deny homophobia in the face of it is as equally homophobic. Julia Hartley-Brewer, in the days after Owen Jones walk out on her homophobia, has been trying to paint herself as the “victim” of all this. Her words ring as hollow as those who tried to deny the Nazi’s anti-Semitism in the 1930s, and it took decades to expose the Nazi’s homophobia.

Homophobia kills, simply look at the faces (10) and lives (11) of the people murdered at The Pulse Nightclub, on Saturday. These are the victims of homophobia, so do not dare to try and tell me homophobia is harmless.

Martin and I celebrated our second wedding anniversary on the 14th. Juan Ramon Guerrero
and Christopher Andrew Leinonen were planning their own wedding. They were murdered together at The Pulse Nightclub. They won’t be married, instead they will be buried together.

Drew Payne

Wednesday, 10 February 2016

Who Cares About Gay Mental Health?

On the 29nd January the charity PACE suddenly closed because of lack of funds. (1)

PACE opened in 1985 to “support LGBT+ people to manage the difficulties they face in their day to day lives; at work, school and home.” (2) To LGBT people in London, PACE provided counselling, advocacy, training, youth work, research and mental health support services.

This wasn't high profile or glamorous work, it certainly wasn't work that made it into the headlines of many newspaper articles, on even online articles, but it was still to many LGBT people PACE was a lifeline. The singer Will Young became a patron of the charity after being involved in some of its workshop (3). But even a celebrity patron wasn't enough to save PACE.

The deep cuts to Local Government funding have deeply afforded many small charities like PACE, charities that relied on grants and funding from Local Authorities. Especially charities, like PACE, that provide services that are not popular or are not seen as “warm” and “cuddly”. Mental health charities always have problems raising money from public donations.

Unfortunately the need for organisations like PACE has not gone away. To be Lesbian or Gay now is very different then it was back in 1985, we have marriage equality, employment protections, equality protections; and yet many things remain the same.

Will Young has talked about the shame he felt over being gay, shame that he internalised growing up with the homophobia around him. “I will keep coming back to shame because it’s such a fundamental thing,” he said. He described a circle of drinking, sex and watching porn until he finally overcame it (4).

Olly Alexander, the 25 year old singer of Years & Years has spoken of the problems he had coming out as gay. He felt repeated pressure to be heterosexual, was bullied for being gay and at 19 he sort counselling for anxiety. But since coming out Olly has added that his anxiety did not automatically go away. “Once you admit to yourself and the world that you’re gay, there’s an expectation that you put on yourself: you’re fine now, you’ve gone through the whole thing of being gay, and now you have to prove to yourself that you can live a happy life and be happy,” he said. (5)

Homophobia doesn't just affect those coming out as gay; it can affect someone at any age. Stephen Fry recently opened up about low and suicidal he felt after coming face to face with a “frothing” homophobic politician. In 2013, while making a documentary, he had a heated interviewed with Simon Lokodo, a Ugandan government minister. Lokodo said gay sex was “worse than child rape”, amongst other homophobia. Stephen Fry stood by his opinions during the interview, but afterwards fell into deep disappear and depression. Lokodo's homophobia tipped him over into a suicide attempt that night (6).

The year 2014-15 Home Office figures saw a 22% rise in homophobic hate crime (7). In England and Wales there were 5,597 homophobic hate crimes were reported, but this figure is probably only a quarter of the actual homophobic hate crimes committed. Only one in four hate crimes are reported to the police (7). That is over 20,000 victims of homophobic hate crimes, over 20,000 people suffering the psychological effects of being the victims of these crimes.

Homophobia hasn't gone away, and neither has its negative effects on LGBT people's lives, but due to this Government's severe slashing of local Government funding there is now one less place were LGBT people can get support and advice. The skills and expertise that PACE built up over thirty years have now been lost, and will be difficult to re-create again. Now is this benefiting anyone?

This Government's policy of austerity has already cut deep into public services, and again the services to LGBT people are the ones that suffer first and deepest. How can the Government talk about equality and supporting working people when their cuts do this?

Drew Payne.

Wednesday, 3 February 2016

Sorry is the Easiest Word to Say

On 26th January, Jeremy Hunt apologised in Parliament, over the death of a one year old boy from septicaemia. Hunt said: “Whilst any health system will inevitably suffer some tragedies, the issues in this case have significant implications for the rest of the NHS that I'm determined we should learn from." (1)

But how can he say he is “determined” to learn from it when the changes brought in his government party lead to this boy’s death.

William Mead (The one year old boy) died on 14th December 2014 from septicaemia, secondary to pneumonia. The boy’s parents had repeatedly taken him to his GP and repeatedly called to NHS 111 about William’s deteriorating health. The official NHS England report (Only published in January 2016) stated that if the Call Handler (Non-clinically trained staff who answer NHS 111 calls), who spoke to William’s parents the last time they called, had recognised how seriously ill the child was, William’s death may have been prevented (1). This is very demanding.

NHS 111 has been plagued with problems; poor staff training (3) using untrained temporary staff and poor supervision of staff (3), claims of being “dangerously understaffed” (4) and an uncomfortable lack of clinical staff (5). In January this year; Integrated Care 24, which handles NHS 111 and out-of-hours GP calls in Norfolk and Wisbech, was criticised for not publishing a damning, leaked report into their performance. The report stated that people had to wait 12 hours for a call-back, which caused significant patient safety issues, a lack of GPs employed there and the poor level of staff recruitment (2). This was over a year after William’s death.

To be cynical it always looked like NHS 111 was brought in as a cheap replacement to its predecessor, NHS Direct, but what other conclusion can be drawn. NHS Direct employed experienced nurses to triage all symptomatic callers (Any call about a person with medical symptoms) and gave them appropriate advice, these nurses were employed on the equivalent of Band 6 and above. With NHS 111 all calls are triaged by non clinical call handlers, using computer algorithms (a computerised assessment system), which seems to be a tick-box assessment. These call handlers only have six weeks training (6). They do not have the clinical experience to recognise when something is wrong, when symptoms do not sound “right”, when there are complications that increase the severity of a person’s symptoms. There are nurses available in the call centres but they don’t triage calls, they are there to advice the call handlers. There have also been whistleblower claims that NHS 111 is short of these nurses (5).

I used to work for NHS Direct (Back at the beginning of the millennium) as a Nurse Advisor. Telephone Triage (Assessing patients over the telephone) is a difficult and complicated skill, because you cannot physically examine the person so you have to carefully talk to them to get a “picture” of their symptoms. I couldn’t have safely done that without the years of nursing experience I had built up before starting that job to call on. Many of the people I spoke to had a poor basic knowledge of their bodies, what is normal and what are symptoms of illness. I do not know how we can expect non-clinical call handlers to do this complicated assessment, it is more than just reading questions off a screen.

I have repeatedly turned down offers of jobs at NHS 111 in the last four years and always for the same reason, I do not feel it is clinically safe and I don’t want to work for a clinically unsafe organisation. It may sound selfish, but I want to keep my registration as a nurse.

Unfortunately I do not see NHS 111 improving any time too soon. Jeremy Hunt has proved very deaf to the concerns of healthcare professionals and this Government has reduced their spending on the NHS (7). Are they willing to spend the money it will take to make NHS 111 a safe service?

Drew Payne

Tuesday, 26 January 2016

An Day's Honest Pay for an Honest Day's Work?

Not many people come into nursing for the pay but we do need to survive and our pay is the reward
for our dedication and professional development. At least I still hope that it is, but the evidence is rapidity evaporating.

The government has just announced that they want nurses' pay rises to be frozen at 1% until 2020, another four years of below inflation pay rises. They also want to abolish the yearly increments that nurses receive under Agenda for Change (AfC), first introduced in 2004. These yearly increments were designed to encourage professional development, as an incentive for nurses to develop within their role, to improve their clinical skills and therefore their patient care skills.

Yet again this government is attacking nurses through our pay. This plan will mean that nurses facing 10 years of frozen pay or just 1% pay rises (Many nurses didn't even get the 1% pay rise because if you got an AfC increment last year then you didn't get the 1% rise). Nurses got a 2.25% rise in 2010 and since then it has been frozen pay or a 1% rise (though not for all).

But this is nothing new, since 2004 nurses pay has fallen in real terms. In 2004 the starting salary for a Band 5 Nurse (The grade most Staff Nurses are employed on and the starting grade for qualified nurses) was £18,698 (1). Using an inflation calculator, if that salary had increased in line with inflation it would now be £26,364 (2), but it isn't. Today that Band 5 Staff Nurse starting salary is £21,692 (1), £4,672 less than the inflation corrected salary. In the last eleven years, nurses' salary has fallen in real terms by 21.5%. MPs received an 11% pay rise last year to bring their salary in line with other professionals; I do not hear George Osborm or Jeremy Hunt calling for a 21.5% pay increase for nurses to restore the pay we have lost in real terms.

Osborn and Hunt are calling for the opposite. They are saying that any higher pay rise then 1% is unaffordable. Previously there has been a lot of talk about removing unsocial hours payments to nurses too. Many people may say it is all just Government spin, but there is some truth in their claim, a very, very uncomfortable truth. Britain spends almost the least on health out of the original 15 EU countries (3), we are 13th out of the 15 countries (4), well behind countries like Germany and France.

In 2000 we spent 6.3% of GDP on health compared to 8.5% of GDP by the other EU countries. Tony Blair committed us to increasing this amount until we were equal with the other EU countries. We managed this in 2009, under Gordon Brown, when our spending had increased to 8.8% of GDP. Since then, under George Osborn's policies, the spending gap has again increased, as we fell behind the other EU countries. We currently spend 7.3 of GDP on health (compared to 10.1% in the other EU countries) and it is set to fall to 6.6% of GDP (4). Under this Government (During both terms in office) we have seen a real cut in health funding that is starving the NHS or resources – and the Conservatives promised to “ring fence” spending on “frontline care” back in 2010, they must have a definition of “frontline care” that I have never heard of.

Osborn did find an extra £3.8 billion for the NHS in his autumn statement (5), but almost of all of this (If not the total £3.8 billion) looks as if it will be swallowed up the debts already run up by NHS trusts in the first half of this financial year by the cuts to their funding (6). The Government currently has Lord Carter heading up review to find £5 billion of cut from NHS funding (7). That will certainly crawl back the amount that Osborn found for the NHS last autumn.

But how will capping nurses' pay (Cutting it in real terms) affect the NHS? 92% of the 225 acute hospital trusts in England do not have enough nurses to meet the safe staffing levels on their wards (8). Over 9 out of 10 hospitals are short staffed, they don't have enough nurses to fill all their roles. Well staffed hospitals save people’s lives (9). A study published in the British Journal of Anaesthesia found that the third of hospitals with the lowest number of nurses per patient had death rates 7% higher than the third with the most number. The Department of Health has said that staffing levels are a priority (10) yet how is cutting nurses' pay in real terms and stopping our yearly increments dealing with this shortage?

Nurses are leaving the NHS because of the low pay and the heavy, tiring workload. They are joining Nursing Agencies were their pay is higher and they can pick when they work, or else they are leaving nursing altogether for jobs that pay more. These are experienced and skilled nurses leaving the NHS and as they leave so their skills and experience are also lost. This Government seems to be doing nothing to change situation and everything they can to increase it. Are they blind?

I was a Staff Nurse before Agenda for Change (AfC) came in and I remember how hard it was with pay. Each year our pay rise was set by the Government, if we got a pay rise at all, and they were always below inflation. One year (Under John Mayor's Government) I received a 1% pay rise that was phased in over three separate increases. My pay by 0.3% each time, I didn't notice the increase it was so small. The only way to get any decent pay rise was to go after a promotion, either be promoted to the next grade on the Unit were you worked (not always possible) or else look for a new job elsewhere. The turnover of Staff Nurses on wards was terrible, it made professional development and building up staff teams very difficulty.

Janet Davies, Chief Executive and General Secretary of the Royal College of Nurses (RCN) said it best: "We have to keep the nurses we've already got...They're leaving because they're overtired - it's a bit of a vicious circle... Nurses haven’t had a significant pay rise for a long, long time, they are struggling to make ends meet. It is about time we valued our nurses." (11)

The backbone of the NHS and its biggest resource is its staff, we are the people that keep the NHS running and provide its high quality of care, so why is this Government attacking us? Cutting staff's pay in real terms is a direct attack on us. Nurses have always been a soft target for politicians because of our deep reluctance to strike and this Government is exploiting it. This is an issue we need to strike over and make sure the public know why we are doing it. Even a simple one day strike by staff not providing emergency care will deeply embarrass this Government. The very limited one day nurses’
strike back in 2014 did this.

Whether you are a nurse or not, if you were ill in hospital would you be happy to be cared for by a tired and under paid nurse? No? Then why are we tolerating another attack on nurses by this Government?

Drew Payne

Saturday, 16 January 2016

Quality or Quantity

On 21st July 2015, Gill Pharaoh died, aged 75. She was a retired Palliative Care Nurse who had written books about caring for people at home, chronic illness management and palliative care. All this has been over shadowed by the nature of her death.

Gill Pharaoh died in an assisted dying clinic, in Switzerland.

Ms Pharaoh didn't have cancer or any other terminal condition, but she was old age. At 75 she was experiencing the effects of old age on her body and her life and she didn't want the loss of ability, control and dignity that she saw ahead of her.

But this wasn't a woman acting on vanity, this was a woman who knew the realities of old age, she was a retired Palliative Care Nurse and had written books about chronic illness and dying at home, and decided she wanted to choose the time and way she died. Her death should be the wake-up call that we, as a society, are desperately overdue a sensible and adult debate on euthanasia and assisted dying.

A debate that looks at people's wishes and concerns. More and more we are finding ways to treat and manage different health conditions, and people are living longer; but not always living well. We can keep people alive longer, it is now common to see elderly people living with two or more chronic health conditions (Something that was rare even thirty years ago), but is it always right to keep people alive when we also rob them of their dignity and quality of life?

We need to debate, level-headily and calmly, the way people who wish to have control of over their lives and to choose how their lives end, comfortably and with dignity. We also need to debate the safeguards needed in assisted dying. Safeguards to prevent people being pressured or bullied into assisted dying.

A debate that listens to people's wishes and the views of people living with long term conditions and life-limiting conditions, we need to listen to the people involved first.

This debate, I fear, we'll never have, because at the first mention of euthanasia we are swamped with hysteria from our media and religious leaders. We are bombarded with talk of “Doctor Death” and old people being forced into death camps, and this is all we seem to hear. The one word that dominated the reporting of Gill Pharaoh was “healthy”, there was so little reporting of her reasons and rational. How can we have an adult debate in this climate?

Every fortnight a Britain travels from the UK to Switzerland to use one of their assisted dying clinics; of all the foreigners using these clinics Britain's make-up a fifth of them (1). These are the people who can afford and are able to travel to Switzerland.

We are long overdue a calm and adult debate about assisted dying, but in our climate will we ever get that or will we just be drowned out by the hysterical shouting, again.

Fourteen years ago my mother died from cancer. At the end of her life she stopped eating and drinking, by her own choice, because she'd grown too tired of her illness to carry on.

Drew Payne