It's World Mental Health Day, so stop stigmatising my pills.

Today is World Mental Health Day, and amidst the stamping out of stigma and awareness raising there is also a loud and pervasive perpetuation of misinformation. I've already been asked to give money to people 'at risk of mental health', for instance, when mental health is surely the goal - mental ill-health is where it becomes problematic. I've certainly never been asked to donate funds to fight physical health.

Mental ill-health has characterised much of my life, and is frequently far more incapacitating than my physical impairments. I've taken psychiatric medications for 17 years, and that's unlikely to change any time soon. I'm not overjoyed at the sheer range of pharmaceuticals I swallow every morning and evening, but it is far from the most significant aspect of my mental distress. So why do so many people focus on the pills as the problem?

For instance, as part of World Mental Health Day awareness on twitter, a study telling me that women's use of antidepressants is at crisis point keeps appearing. In this, Platform 51's director of policy, campaigns and communications Rebecca Gill, said:

"These shocking figures reveal an escalating crisis in women's use of antidepressants"

I appreciate that their study goes on to explain that they are criticising the practice of prescribing antidepressants in the absence of any other psychological support, the frequently highlighted statistics like, "A quarter, 24%, of women on
antidepressants have been on them for ten years or more" serve only to stigmatise people like me.

Rebecca Gill goes on to say,

"Worryingly, our research suggests that there is still a huge stigma attached to mental health problems. With 1 in 5 not telling their families and 1 in 10 keeping it a secret from their partner, it is clear that women fear they will be judged on the state of their mental health",

seemingly without the awareness that scare statistics about antidepressants contribute to that stigma. Their chosen headline is not that rates of women in mental distress is at crisis point, rather our use of antidepressants to cope with it.

Antidepressants are not the enemy. I agree that appropriate psychological support should be more widely offered, and that medications should be reviewed regularly. However the problem is not with the pills. The problem is the world we live in that makes so many of us despair enough to seek medical help to manage it. It's with the levels of rape, domestic violence, female genital mutilation and sexual abuse that can make live unbearable for so many. World Mental Health Day should not be 'celebrated' by stigmatising us for coping in whatever ways we can.

[The image is a photograph of many different medicinal pills and capsules. It was taken by e-Magine Art and is used under a Creative Commons Licence]

Abortions are not the same as pensions

The Government is set to announce changes to abortion law next week, which will involve pregnant women being offered 'independent' counselling, rather than receiving counselling from the organisation which is due to perform the procedure.

The change is being put in place by Nadine Dorries and Frank Field, both MPs, and the anti-abortion sentiments behind it are undeniable in the face of Dorries having

"criticised the "financial incentive" of the counselling offered by abortion clinics, claiming 60,000 of the annual 200,000 terminations would not take place if women were offered the chance for counselling elsewhere" (Guardian).

Nadine Dorries also said, "The important thing is that the government have highlighted and agreed that counselling by organisations that are paid to conduct the procedures is not independent [...] That's very reassuring."

Similarly, Frank Field has said, "It is a general principle that advice and services should be separate," [...] I have no evidence of that [biased advice]. But we had no evidence of mis-selling of pensions until people investigated." (Guardian).

The thing is that abortions are not the same as pensions (I think that qualifies as a sentence I never thought I would need to write). Abortions are healthcare, and with healthcare, the advice and services are generally not separate, and nor should they be. If a surgeon is going to be operating on me, I want her to be the one who talks me through the procedure and warns me of any risks. If a dentist is going to be pulling out one of my teeth, I want him, not an independent organisation (who is probably against the pulling of teeth) to give me the 'facts' beforehand.

The surgeon that did my last operation gave me all the facts I needed. I respected her opinion, and she knew the details of my case. These details can make a big difference to the advice you are given - if someone has diabetes, or heart disease, they might be given different surgical advice than someone without. If someone is taking certain medications, they need specific advice that pertains to their situation in advance of surgery. What we don't need is to be directed to an organisation that is against the surgery ever taking place, who know nothing about our individual circumstances, who are thought to be in a better position to 'advise' because they will not be doing the procedure themselves.

In a healthcare context, learning from the misselling of pensions makes no sense at all. Many abortions are done in NHS hospitals - are they also thought to be profiting from women going ahead with a termination? Because if so, they also profit from people going ahead with verruca removal, chemotherapy and colonoscopies. Do we need independent organisations to advise us on those too?

It's not benefits that are outrageous, it's the cuts.

The Guardian reports on attacks on people who have been on disability benefits for 10 years or more.

Employment Minister Chris Grayling described the figures as "outrageous" and promised action to get people off benefits and back into work.

There is a shocking lack of acknowledgement or awareness that if someone has been on disability benefits for 10 years are probably pretty ill, have significant impairments, or face massive barriers.

"Thousands of people who have simply been cast aside by a welfare system that does nothing but put them in a queue for benefits and then forgets about them.

"Well those days are over. We will no longer accept a system which writes people off at a drop of the hat and expects the taxpayer to foot the bill."

With statements like that, they appear to be trying to cloak their attacks in the guise of concern for the benefit recipients, but it is a thinly disguised threat where the biggest concern is clearly the 'taxpayers footing the bill'.

It shows a complete lack of comprehension of the reality of the day to day lives of those who have been on long-term sickness benefits, and of why people are in this situation. There are many things the government could do to improve disabled people's lives and, yes, their chances of eventually getting back to work, but cutting off benefits helps no-one.

To put the £4.2 billion in context, we also know that £16 billion worth of benefits go unclaimed every year.

(Cross-posted at Where's the Benefit?)

Not fit for work, not fit for benefits.

Many disabled people are currently terrified of the threats to their benefits, and those with mental health problems are especially scared. The benefit system has always been more geared up towards assessing physical impairment, and the new ESA assessments appear to have reinforced rather than reduced the discrepancy.

Meridian Tonight has reported on the case of Nicola Hobbs, who after years of anorexia applied for a job. However, she failed the health test and so was not given employment. As a result of this she applied for benefit and in this case was found fit for work.

A very confusing situation - judged too ill to work when applying for a job, yet fit for work when applying for benefit. But to add insult to injury, these two opposing judgements were made by the same company - ATOS Healthcare, who do the ESA assessments for the government.

Meridian Tonight has a two minute video covering the story on their website. Worryingly, it is not the first time I have heard of cases exactly like this, with ATOS declaring the same person unfit for work when doing an employment health review, yet fit for work when doing a benefit assessment.

(Cross-posted at the new blog, Where's the Benefit?)

Headache

I've had a headache for a week. Constant. I've been taking painkillers following surgery, then I've had a horrendous mouth infection, so taking more painkillers for that. So I couldn't understand why I still had a headache!

So I read about painkiller headaches. That sounded right. Taking painkillers can cause headaches. So I read, you're supposed to stop taking the painkillers to make the headache go away. But I'm not taking the painkillers for the headache, so what to do? I can't stop taking them or my mouth may explode and my foot fall off (not that I'm prone to exaggeration).

But then I read that you only get painkiller headaches if you are taking the painkillers for the headache. If you are taking them for some other reason, they don't happen. And I am, I'm taking them for my leg and my mouth.

So, I still have a headache and no idea why. I initially thought it was a pre-menstrual one, then it carried on post-menstrually. Then I thought it was the toothache causing it. It could still be I suppose.

I don't know. I'm just moaning.

Pharmacology

Pharmacies seem to have a new policy of doing medication reviews with patients, and as I use whichever pharmacy is most handy at any given time, I keep using different ones and thus having more and more medication reviews.

Today's was interesting. It turns out that two of my meds cancel out the action of one other, and that that one other cancels out the action of the other two. Interesting! All three prescribed by the same person, incidentally.

Also, the pharmacist made an assumption about my mental health diagnosis on the basis of the meds I'm on. It is a diagnosis I have had in the past, and his guess seems as arbitrary as the numerous guesses I've had from numerous psychiatrists I have seen, so no harm done.

He was impressed that I knew what each of my medications was for. It's worrying, he said, how many people don't. I'm the kind of person who always wants lots and lots of information. I can't imagine swallowing stuff daily without having researched it thoroughly, never mind not knowing what it was even prescribed for.

Someone in my family has been on antidepressants for 21 years, and she still has no idea that that's what they are. She obediently swallows them every night. I haven't had the heart to tell her, but I don't know if I should or not. She knows I looked it up, and she hasn't asked me for details. If she asked, I would definitely tell her, but as she hasn't... I dunno. The doctor tells her that they help her to feel better, and that she would feel much worse without them, so she should keep taking them. She's of a generation to not really challenge doctors.

As for me, I keep taking the pills. I'm reducing the odd one slowly, but I seem stuck on them for the time being at least.

Not-So-Helpful Advice from Women's Magazines

My fifth guest post at the F Word.

Yesterday while waiting for an appointment, I picked up one of the women's magazines on the waiting room table and started skimming through it to pass the time.

I came across an article entitled '25 health tips women doctors want you to know'. I thought this may be interesting - or at least more interesting than how to emulate the latest look from the latest celeb, so I started to read.

To say it was disappointing is somewhat understating the matter. One tip told me to use moisturiser. Another to walk rather than take the lift. Another to eat plenty of calcium. Then one tip was to buy a vibrator. While this may be good advice, the explanation behind it was infuriating! It said that some men are not good at foreplay, and if this is the case with 'your man', then rather than be frustrated, get a vibrator instead and you won't have any problems any more.

On so many levels, this is dreadful! Firstly, many women are single, many are with women not men. Heterosexist presumptions still prevail everywhere. Secondly, still calling it 'foreplay' separates it from 'sex' as if they are two completely different matters, with one building up to the other rather than it all being one whole experience. And thirdly, if your partner is bad at sex, or does not understand your sexual needs or desires, then that is something to work on with them, have fun exploring and mutually learn about. Saying, 'oh he's not good at that bit' is kinda letting him off the hook, let's face it!

If your male partner was having trouble enjoying sex with you, you can be sure the magazines wouldn't advise you to get him a blow-up doll or simulated vagina, it would tell you 'how to please him' and exactly what you should do to make sure he was happy.

By all means buy a vibrator, and enjoy it. But don't take advice just because it comes from a doctor in a magazine and use it to substitute a partner with good technique rather than talking to that partner about the problem and what you do and don't like.

I very rarely read women's magazines these days, and if I do it tends to be the Chat and Take a Break type when I'm ill, rather than the beauty / fashion ones. But whenever I do look at those - usually in a doctor's waiting room - I see that the same old messages we have always had from them are still there.

A few weeks ago I made some photocopied flyers to surreptitiously slip inside teenage and women's magazines in shops. They counter some of the usual crap messages we get from these publications, and question their content. If you want to get hold of any of these flyers I'd be happy to send you some if you send me an SAE to

Pippa, PO Box 4663, Sheffield, S1 9FN

Alternatively if you want to get any of my zines just let me know when you order that you want some of the magazine flyers and I'll stick some in the envelope for you.

It's small actions like sticking the flyers in the magazines that can actually make a real difference. When we are feeling powerless in the suffocating patriarchy around us, knowing that a woman or girl somewhere who might never have been allowed to challenge the presumptions of heterosexuality, the fascist beauty standards around us or the everywhere-written laws of body hair, who bought that magazine today, may get some relief and empowerment from the words they unexpectedly find stuffed inside, really does help.

Access to Healthcare: Blogging Against Disablism Day 2009

Well, it's that time of year again when we blog against disablism. It's such a massive topic that it is very difficult to know what to say, what to write about.

I want to talk about disablism within healthcare. It is a huge subject, and there are many issues, and I can't cover them all in this one post.

I will begin with the very funny, and worryingly apt, Code of Ethical Behaviour for Patients

DO NOT EXPECT YOUR DOCTOR TO SHARE YOUR DISCOMFORT
Involvement with the patient's suffering might cause him to lose valuable scientific objectivity.
BE CHEERFUL AT ALL TIMES
Your doctor leads a busy and trying life and requires all the gentleness and reassurance he can get.
TRY TO SUFFER FROM THE DISEASE FOR WHICH YOU ARE BEING TREATED
Remember that your doctor has a professional reputation to uphold.
DO NOT COMPLAIN IF THE TREATMENT FAILS TO BRING RELIEF
You must believe that your doctor has achieved a deep insight into the true nature of your illness, which transcends any mere permanent disability you may have experienced.
NEVER ASK YOUR DOCTOR TO EXPLAIN WHAT HE IS DOING OR WHY HE IS DOING IT
It is presumptuous to assume that such profound matters could be explained in terms that you would understand.
SUBMIT TO NOVEL EXPERIMENTAL TREATMENT READILY
Though the surgery may not benefit you directly, the resulting research paper will surely be of widespread interest.
PAY YOUR MEDICAL BILLS PROMPTLY AND WILLINGLY
You should consider it a privilege to contribute, however modestly, to the well-being of physicians and other humanitarians.
DO NOT SUFFER FROM AILMENTS THAT YOU CANNOT AFFORD
It is sheer arrogance to contract illnesses that are beyond your means.
NEVER REVEAL ANY OF THE SHORTCOMINGS THAT HAVE COME TO LIGHT IN THE COURSE OF TREATMENT BY YOUR DOCTOR
The patient-doctor relationship is a privileged one, and you have a sacred duty to protect him from exposure.
NEVER DIE WHILE IN YOUR DOCTOR'S PRESENCE OR UNDER HIS DIRECT CARE
This will only cause him needless inconvenience and embarrassment.

The reality is that many disabled people receive inadequate medical care. People with mental health problems can have huge problems getting physical problems to be taken seriously. People with physical impairments can find that any other symptoms or illnesses they have are dismissed. People with multiple impairments can be written off as hypochondriacs.

Perhaps doctors consider that if you are already in pain with one problem, then additional, unconnected pain is not that important. Certainly, many doctors feel that if you experience madness then surely a physical symptom is all in the mind. I've lost count of the number of times that I have been told that something treatable I'm experiencing will *not* be treated, 'because you already take a lot of tablets'. When I vomited every day for 10 months, I was never sent for tests because it was 'bound to be anxiety'. Medication side-effects are not taken seriously - serious though they may well be.

The result is that disabled people suffer more than we need to. Health is neglected, and further problems result. We may not be straight-forward patients, we may cause the doctor to need to work a bit harder, but that's not an unreasonable expectation, surely. It is their job.

Being listened to, being taken seriously, being treated well, are all things which everyone should be entitled to, and which everyone should receive.

In the news recently was harrowing accounts of neglect of learning disabled people who were supposed to be receiving healthcare:

There was a man, Martin Ryan, who starved to death after not being fed for 26 days while in hospital. Five other people's care was also slammed.

The British Medical Journal states that:

One year after its damning report into the delivery of health care to disabled people, the Disability Rights Commission, the statutory watchdog organisation for people with disabilities in England, Wales, and Scotland, says in a new report that little has changed to bridge the gap in health care.

The Disability Rights Commission report:

An investigation into healthcare given to people with mental health problems and learning disabilities shows they often get worse treatment than others.

The Disability Rights Commission (DRC) - which examined eight million health records - says the government could face legal action unless things change.

The study concentrated on primary care in England and Wales, which will soon fall under new equality laws.

The government says it has already started acting on the report.

The 18-month investigation shows that people with learning disabilities and mental health problems are more likely to have a major illness, to develop a serious health condition younger and to die sooner than the rest of the population.

Such people were less likely to have routine tests and screening to pick up signs of a problem in its early stages.

'Lazy fatalism'

The DRC also found that people with learning disabilities and mental health problems face "real barriers" when accessing services.

"The acid test of a national health service is not whether it works for those who are generally healthy, but whether it benefits those with the greatest risk," said DRC chairman, Bert Massie.

He said that the response from the government and the NHS was "deeply inadequate", a situation which was made worse by "a dangerously complacent attitude and a lazy fatalism" on the part of the medical profession.

"This is completely unacceptable - we need to see a radical change in the commissioning, targeting and delivery of health services in order to close this gap quickly."

The British Medical Association (BMA) has described the findings as "extremely worrying".

"As doctors, we believe it is unacceptable for the healthcare needs of this group of people to be ignored," said Dr Sam Everington, who co-chairs the BMA's equal opportunities committee.

He said the report would be discussed by GPs at the BMA in the near future.

The Department of Health said it would be working with the DRC to develop a full response to the investigation.

Mental health charity Sane said it was "disturbing" that people with mental illnesses were at greatest risk of becoming physically ill through neglect.

The charity's Marjorie Wallace called for a "new drive amongst all health professionals to ensure that each time a person with mental illness receives medical help, they are given a physical health check".

Eight million records

The investigation spoke to senior health professionals, policy makers and disabled people themselves.

Researchers analysed eight million health records in three primary care trusts (PCTs) in England and one local health board in Wales.

The DRC says that in spite of increased needs of these two groups, important checks are provided less often.

For example, people with learning disabilities who have diabetes have fewer measurements of their body mass index, while those who have had a stroke have fewer blood pressure checks.

The investigation identified a problem known as "diagnostic overshadowing" - where symptoms of physical ill health are often seen as part of a patient's mental health problem or learning disability and are not properly investigated or treated.

More than 50% of people who spoke to researchers said they experienced difficulties when trying to see their GP.

They identified the attitude of reception staff, inflexible appointments and inaccessible information as being some of the causes.

A few said they were not registered with a family doctor or had been struck off the list for being too demanding.

The report did identify areas of good practice but the DRC says services are frequently working in isolation and initiatives developed by specialists have not become part of the mainstream.

The government is being urged to put in place a number of improvements to "close the gap".

"We agree with the broad thrust of the DRC's recommendations and have already started to act," said health minister Rosie Winterton.

She said £7m had been made available to almost 90 PCTs to employ "wellbeing nurses" to help mental health patients.

The department has also allocated £42m to PCTs to help them to implement further measures to improve the care of people with learning disabilities.

This is not theoretical, this is actually happening, and I witness or experience it myself, all too often.

If disabled people are to ever have equal access to society, we need equal access to good healthcare.

---

Please see also my other Blogging Against Disablism Day post, over on my photography blog, where you can see various empowering disability rights designs I have created.

Feminist Carnivals

I found out yesterday that my Access to Feminism post, about (dis)ableism in the feminist community has been featured in the 68th Carnival of Feminists. They have randomly called me Penny, but that doesn't matter, it's nice they spotted and included my post. The issue does need to be brought out into the open.

There are some other interesting posts in the Carnival. What a crazy random happenstance talks about Feminist Dealbreakers - what constitutes a 'dealbreaker' in the relationships in her life. Behaviours or attitudes which force an end to a relationship with someone. For her, it can be people who claim to be feminist pro-lifers, for instance.

Reading the post, and the discussion continues in the lengthy comments section, got me thinking. I realised I have different deal-breakers depending on who the person is! Most notably if they are new to my life I deal break quickly and firmly, for instance someone being anti-choice or pro-pornstitution writes them off instantly), whereas people I have known for many years I seem more able to tolerate some of those things. Partly because huge numbers of people from my childhood (half my family, many of my friends), are Roman Catholic and so being 'pro-life' was kind of the default. Hell, I was!!

I guess I feel I can't expect my old friends to change in order to remain friends with me, but I don't have to put myself through trying to make friends with a new person with whom I am fundamentally opposed.

Jill at Womenstake wrote "Pro Life"? Puh-lease! about how misleading the term actually is, when preventing access to family planning, contraceptive and abortion services and products can indeed put lives at risk.

I didn't need to read Is Sarah Palin a Feminist Icon? No she's not. People get this mixed up, like Margaret Thatcher must be one too, for being the first female Prime Minister. No no no no!


NaBloPoMo

Diagnosis Research

At a hospital appointment last week, I received a diagnosis of sensorimotor axonal neuropathy. Possible causes they are looking at are medication-related, coeliac disease, and vasculitis. We know that I don't have diabetes or alcoholism, which are the most common causes.

So, of course, I'm doing all the googling. Amongst others, I have learned these two things:

1)

With exception of the Roman Catholic Church, most mainline Christian churches offer their communicants gluten-free alternatives to the sacramental bread, usually in the form of a rice-based cracker or gluten-free bread. These include United Methodist, Christian Reformed, Episcopal, Lutheran, The Church of Jesus Christ of Latter-day Saints, and many others.

Roman Catholic doctrine states that for a valid Eucharist the bread must be made from wheat. [...] On August 22, 1994, the Congregation for the Doctrine of the Faith apparently barred coeliacs from ordination, stating, "Given the centrality of the celebration of the Eucharist in the life of the priest, candidates for the priesthood who are affected by coeliac disease or suffer from alcoholism or similar conditions may not be admitted to holy orders." After considerable debate, the congregation softened the ruling on 24 July 2003 to "Given the centrality of the celebration of the Eucharist in the life of a priest, one must proceed with great caution before admitting to Holy Orders those candidates unable to ingest gluten or alcohol without serious harm."

2)

In patients with an aggressive, evolving polyneuropathy or a specific paraneoplastic syndrome, additional testing for an occult malignancy is often performed

(my bold - am I possessed by some kind of ghost with cancer?!)

More seriously of course, it is good to finally have a diagnosis. Just need to try and get to the bottom of what's causing it, to be able to find out if it can be treated.

Disgraceful!

A terminally ill Ghanaian woman has been removed from hospital in Wales to be deported, because her Visa had run out. I'm so disgusted with my country's lack of care, humanity and basic respect.

Cancer Patient Loses Visa Battle
A Ghanaian woman who came to the UK five years ago and became a student is being flown back to the African country, despite being terminally ill.

Ama Sumani was taken by immigration officers from a Cardiff hospital where she has been receiving dialysis for a year after cancer damaged her kidneys.

Ms Sumani, 39, whose visa has expired, said she cannot afford care in Ghana.

Her solicitor said they had pleaded compassionate grounds. The Home Office said it examined each case "with care".

Before leaving, she had been comforted by a nurse in a day-room at the University Hospital of Wales.

The immigration service arrived at 0800 GMT.

Ms Sumani was tearful but calm when she left hospital in a wheelchair with five immigration officials, one carrying her suitcase, and she was driven away.

She left on a flight from Heathrow to Ghana at 1435 GMT.

The cancer she is suffering from - malignant myeloma - would ordinarily be treated with a bone marrow transplant, but she was not entitled to the treatment.

The dialysis treatment she has been receiving is helping to prolong her life and her last treatment was on Tuesday evening.

Legal status

But it needs to be repeated regularly and there are concerns she would not be able to access dialysis treatment centres in Ghana.

Health care there is also private but Ms Sumani said she could not afford it.

A spokesman for Ghana's high commission in London said the country had two fully-equipped hospitals in Accra and further north in Kumasi.

He did concede that access to treatment was costly but said that if Ms Sumani was a member of the Ghana national health insurance scheme she would still receive treatment.

A friend Janet Simmons said Ms Sumani was a widow and a mother of two children, who were currently being looked after by members of her church in Ghana.

She first came to the UK as a visitor in 2003, but then changed her status to student and attempted to enrol on a banking course at a city college, her solicitor explained.

Ms Sumani's lack of English prevented her from pursuing the course and she went to find work which contravened her student visa.

In 2005 she returned to Ghana to attend a memorial service for her dead husband.

But when she came back to the UK her student visa was revoked and she was only given temporary admission which effectively meant she was given notice she would be removed, her solicitor said.

She did not keep in touch with immigration officials and was first taken ill in January 2006. Without the dialysis doctors fear she only has weeks to live.

Her solicitor said she accepted her removal was fair but said they had made representations on her behalf on compassionate grounds.

Ms Sumani is being removed from the country rather than deported because of her expired visa which means she has no legal status in the UK.

A removal means that in theory she could apply to return to the UK in the future.

A spokesman for the Border and Immigration agency said said it would not remove from the UK anyone who they believe is at risk on their return.

"Part of our consideration when a person is removed is their fitness to travel and whether the necessary medical treatment is available in the country to which we are returning," he added.

"Removals are always carried out in the most sensitive way possible, treating those being removed with courtesy and dignity." (my emphasis. Bastards)

You Know It's Not Good When...

your GP gives you antibiotics for sinusitis, and the instructions say,

Take two on the first day, then OD.