Accept your fate

23 Feb

I am being buried alive by professionals. Each fresh attempt to get care, treatment & support for severe & enduring mental ill-health in the past 3 years since I was discharged from community mental health services has led to more & more professionals covering their own arses.

There is no way, simply no way, to get NHS mental health services or social care to respond in a constructive way when they’ve decided to exclude you from care – even when they’ve assessed you as needing that care. They’ll do anything to impose their will. You cannot win.

If you are at the start of this journey – if you’ve just been discharged from NHS community mental health care or social care – know that you cannot win. You will not get the care you need. When they discharge you saying you can be referred back quickly if needed, it’s a line.

It’s a lie.

It’s something the professional sitting in front of you is telling you because it makes their job easier. It makes it easier to get you out of the room, so they can get on with their day. It’s a line. “You can be referred back any time you need.” That’s a lie.

NHS commissioners decided a decade or so ago that the NHS would no longer provide ongoing care to people with ongoing serious mental ill-health. That’s folks living with conditions like schizophrenia & bipolar disorder who are discharged back to GP, often with no care plan.

That’s folks who live with conditions so serious they’ve been sectioned; folks who experience repeated serious health relapses; folks on depot injections. Folks who have effectively been parked, receiving no care except in crisis, with no hope of progress. They are Dustbin Patients.

That’s folks who could be living ordinary lives, whose health conditions are highly treatable, who at the very least could have suffering alleviated to a considerable extent. Tossed in the dustbin. Reduced to living in the shadows, living like animals, left in waves of agony.

If you live with severe & enduring mental ill-health & you’ve just been discharged by NHS mental health services, it’s the end of the line. Do not waste time hoping that things will get better. They won’t. When it comes to psychiatric care, it’s not “Our NHS”.

If you live with severe & enduring mental ill-health, what you’ll find is all sorts of professionals distanding themselves from you – they don’t want to witness your suffering, won’t provide any relief & just want to work with people who can be “fixed”, for that hero buzz.

Even patients who will never get better, who are terminally ill or who have lifelong conditions should receive care – we are still human beings – but no. The NHS tosses us in the dustbin. If you’re a psychiatric patient, you are worthless. An inconvenience. Toxic waste.

If you find yourself discharged from NHS mental health services while still poorly, you’re faced with a choice. Do you want to spend your time in a painful, fruitless fight with bureaucracy? Or focus on your bucket list instead?

False hope causes so much pain. False hope wastes so much time. It’s just pushing air.

What we’ll see with covid is a load of new patients going to the front of the queue – poorly “through no fault of their own” – who’ll have the meagre resources reallocated to them. Those of us already poorly further from help than ever. We will never get on a waiting list.

If you thought it was bad before, it’ll only get worse.

Specialist services will be set up, cherry-picking favoured patients – those deemed fixable within 12-18 months. Good for them! I hope they get the care they need. I hope they go on to lead ordinary lives.

For the rest of us, though, nothing. The NHS will not be providing care for those of us with existing serious mental ill-health. It doesn’t now. It’s not about to start. Don’t waste your time asking. Accept your fate.You are a Dustbin Patient.

Or fight if you fancy it. Good luck if that’s what you choose. We’re all different. I hope you succeed, I really do.

I tried everything – & I’m pretty resourceful. It didn’t work. I’ve wasted years trying to get care, all the while becoming more & more disabled. I’m pretty simple to help – I know what’s worked before. It’s not rocket science. I’m pretty ordinary. Just couldn’t get the help.

If I’d known years ago that all I had ahead of me was years of suffering & decline, I would not have put myself through it.

I’ve tried patiently waiting. I’ve tried asking nicely. I’ve tried asking firmly. I’ve tried writing letters. I’ve tried getting my GP to ask. I’ve tried my MP. I’ve tried advocates. I’ve tried solicitors. I’ve tried everything I can think of. And yet I cannot get healthcare.

I’ve had people DM with suggestions – “Have you tried PALS?” “Have you tried your MP?” “Have you tried, have you tried, have you tried?” Yes. Yes I have tried. For months. For years. No matter how poorly I become, I cannot get care. In mental health, it’s not “Our NHS”.

For any mental health professionals who’ve read this far, it is possible for you to be working really hard, to have a full diary & be seeing patients all the time AND for people like me to be going without needed healthcare. Both can be true at the same time.

If you are working within a system that operates the so-called “recovery model”, by design you will be excluding from needed care folks with severe & enduring mental ill-health & condemning us to a cycle of crisis relapses. You are working within a system that causes known harm.

If this is what you’re experiencing as a poorly person now, I don’t know if it helps to realise that your inability to access needed mental health care is not your fault; that it’s not that you’re a bad person or undeserving; that you’re not alone; that it’s the system.

The system – designed by people with fancy titles & big budgets sitting around big tables in meetings – has weighed up competing priorities & decided that people with your diagnosis or type of suffering will not be provided with care by the NHS or social care.

I tried. Now I know.

Whatever fancy plans people are coming up with for the future of community mental health care it’ll just mean one group or another excluded from care. Currently it’s folks like me, who need long-term continuity of care & treatment. We’re excluded. Who’s next?

Who’s the next category of Dustbin Patient?

Dustbin patient

10 Feb

Today in Nobody Will Take Me Seriously Till I’m Dead …

There was never any need for me to become this unwell and, the more unwell I become, the more services – GP, mental health, social care – withdraw. I have been “reaching out” for such a long time.

What those mental health awareness campaigns don’t tell you is that “reach out”, “just ask for help” is a one-time thing. Miracle cure. Get better, or get lost.

For the first few years after I came into contact with mental health services, I believed I simply had to ask the right way or find the right door or get onto the right waiting list, & that I’d eventually get the care, treatment & support I needed to get back on my feet. Not so.

I started to notice on twitter other people struggling for years to get mental health care. I assumed perhaps services in their area were unusually bad; or they needed a better advocate; or there’d been a mistake. I felt sorry for them.

Then I became one of them.

I didn’t realise till it started being done to me that, the more time that passes, the less likely you are to receive help. That, if you’re not fixed first time or become unwell again, there’s no second chance. That, the longer you are unwell, the less of a priority you become.

That it’s not an individual problem, it’s the system design. That NHS mental health services are designed on an up-or-out basis which excludes people with long-term serious mental ill-health. That I will never get the care, treatment & support I need.

Most people don’t want to see this – they want to believe there’s a just world, that there is hope, that things do come right in the end. But no. No they don’t. Get well soon – or get lost.

Funny how things turn out, isn’t it? All the time I could’ve saved myself if I’d realised this sooner. Instead, I’ve continued to put myself through a system which serves only the professionals. If only I’d realised sooner that all I was doing was prolonging my own suffering.

I tried to fight the system, but the system won.

I don’t have an inspirational story. There’s no happy ending. And there seems to be nothing that anybody can do to either get me needed care or to hold the system to account. I have become a cautionary tale. #mentalhealth

I seem to have been left behind – shoved into a zombie zone where I am the responsibility of nobody; where my suffering is irrelevant (despite what it says in all sorts of fancy laws & policies); and my demise seen as inevitable. Everyone’s got their paperwork squared away.

The professionals can all go home & sleep soundly at night, safe in the knowledge they’ve maintained their boundaries, protected service resources & done as they’re told – or, otherwise, that there’ll be no comeback because there’s no way to hold them to account.

Assessed to death

27 Jan

Your periodic reminder that a mental health assessment is neither neutral nor is it help.

Whilst carrying out an assessment may count as “contact” or “activity” for the purposes of a service’s records, it is not help. If you yank my sprained ankle back & forth to determine whether it is sprained, that hurts.

A mental health assessment is not help for the person being assessed. It may “help” the professional to form an opinion or shape a treatment plan, but it does not help the person who’s required to go through (probably for the umpteeth time) their (probably most awful) experiences.

Offering an assessment is not the same as providing help. An assessment is an imposition, a chore, a task, a trial, when somebody is already in a weakened state. It is a process you are putting someone through as a gateway to possibly accessing help. An assessment is not help.

Provide help. When people are struggling or in crisis, provide help. Scrutiny and questioning is not help. Help people.

Since I first came into contact with psychiatric services almost 10 years ago, I have been assessed numerous times. There reports, all reaching the same conclusion, all making the same recommendations for ongoing care, treatment and support. Yet each new professional wants to start from scratch and assess me again. Each new service wants to kick the can down the road and assess me again, sometimes over weeks, without providing any help. I haven’t had any mental health care for years – no medication, no therapy. Yet all that’s on offer is more assessments. Many more assessments.

I am being assessed to death.

They got me.

24 Jan

The psychiatric system has beaten me. I’ve lost. I tried my best to get the help I need. But all that my efforts have done is show me there is no way to hold mental health professionals to account; that the system will protect itself at all costs. There’s no hope for me now.

I tried my best – but my efforts came to nothing. So this is it now. This is my life. This … suffering. On and on.

The more I’ve been denied care, treatment & support, the more I’ve deteriorated; and the more of my life I have lost. And the more each of the services has withdrawn from me into their own little silos, behind their bunker of disingenuous records. Nobody wants to be caught out.

I really did try my best to get help. But I’ve exhausted all avenues. Challenging the psychiatric system only produces greater resistance. They fight like hell to protect their own interests, those so-called professionals. They’ve crushed the life out of me.

I was trying to make a difference – not just to get myself the needed help, but also to set a precedent so psychiatric services would think twice before treating others the way they’ve behaved towards me. But there’s too little of me left to continue that fight. I’ve lost.

What a waste. What cruelty.

I had such hope for such a long time – it’s coming up to my 10 year anniversary of involvement with psychiatric services. 10 years! That’s how long I tried & tried & tried in all sorts of different ways to get the help I need. That’s a lot of hope. And a lot of wasted effort.

What a lot of needless suffering. Years of it.

The system will always win in the end. The psychiatric system – with its ability to use brute force; with its ability to discredit & undermine detractors in the most fundamental & devastating ways – is uniquely qualified to beat down poorly patients. They got me.

There can be good people working within terrible systems. I’ve met some lovely mental health professionals in person & on social media – kind, compassionate, skillful. I’ve seen people get really good psychiatric care & go on to live good lives. It’s not all bad.

If you’ve had good mental health care & it’s helped you, I am happy for you. If you’re doing your best to make a positive difference to people’s suffering, thank you. Keep going. I want good care for everyone who wants & needs it.

It’s too late for me – but hopefully in future more people will be able to get the care, support & treatment they need.

Don’t worry – I’m not about to do anything dramatic now. This is just a simple statement of facts. It’s too late for me.

The psychiatric system has beaten me.

They got me.

Social prescribing is a lovely idea but it won’t make up for the care I’m not getting

30 Jan

Social prescribing can only play a limited role in helping folks living with serious mental ill-health

 

A news story on social prescribing boomed out of my radio on Monday morning – another jolly report about how this was the way to manage long-term conditions in the community. NHS England had announced a plan to roll out the scheme across the country by recruiting 1,000 social prescribing “link workers” to support GPs and help people improve their health and well-being. It felt alienating, because of my own personal experience of social prescribing.

On the face of it, social prescribing is a good idea – a supplemental service for people with long-term conditions. People with mild to moderate conditions who live in areas where suitable activities are available but who struggle with online searches and need a bit of guidance and motivation may well benefit. Having someone to signpost them to local activities can help them start to improve their general well-being.

The main beneficiary of social prescribing will be GPs – the NHS England announcement was headed “An army of workers to support family doctors” for good reason. Hard-pressed GPs will be able to refer patients to someone else and free up their consulting room at a time when we face a GP shortage.

However, there are a number of problems with social prescribing, especially as it impacts on people with serious long-term mental ill-health.

I speak from personal experience. I live with serious long-term mental ill-health and am currently poorly. NICE guidelines and local healthcare policy specify that I need and should be provided with ongoing care for my ongoing serious health condition. However, I was recently discharged from the community mental health team altogether, to nothing. People with serious chronic physical health conditions would not be discharged from specialist services in this way.

What helps me to is a combination of specialist services, mainstream resources and things that everyone needs like an income, a roof over your head, friends, a spiritual life and meaningful activity.

I first came across social prescribing in 2015. Access to the specialist day centre for people with severe and enduring mental illness (such as schizophrenia and bipolar) I’d been attending since being sectioned had been withdrawn as a result of council funding cuts.

When I asked my GP what I should do now, she referred me to their social prescriber scheme. It turned out to just be sign-posting by a “well-being coordinator”. They’d simply done an online search of a public database of activities in the local area that were open to the general population.

The activities were the sort of thing you’d find advertised in your local library or coffee shop, like exercise, art and ballroom dancing classes, history groups, chess clubs, yoga and gardening groups, run by local businesses or community groups.

The activities they proposed were completely inaccessible to me as a disabled person. In addition, many of the activities required payment (the specialist centre was free at the point of use). The result was that people like me, who had previously been supported to lead full lives despite our serious long-term mental illness, were left sitting at home, staring at the TV.

Shortly after that, I moved to a new area where there was also a GP social prescribing service. The local area has no activities that people with severe mental illness could be referred to, so all I was offered was a mainstream exercise referral scheme lasting a few weeks. I was not able to take this up because my disability means it is completely inaccessible.

What do I mean by “inaccessible”? It can be hard for people who don’t have lived experience to understand why community activities may be inaccessible for those of us living with serious mental ill-health. It’s not that they are scheduled to take place at inconvenient times or are not on a bus route – living with serious mental illness can be just as debilitating as physical disability. The experience of serious mental ill-health varies hugely, and people have different triggers and barriers. As Mark Brown (@MarkOneinFour, writer in residence at the Centre for Mental Health and mental health writer) says:

“When you experience more severe mental health difficulties, it can be hard to access everyday community activities. Not because of times or locations, but because you know you have different requirements that you’d have to explain and put out in the open to people who still might not understand. You might need extra support, have challenges doing things like speaking out loud or doing things that involve touch. You might need to be able to leave at any time, or have extreme challenges feeling safe or supported. It’s difficult to trust that an open community activity will provide that and that people won’t treat you as a second class citizen.

“Sometimes things people with more severe mental health experiences need go beyond encouragement and being friendly and actually require specialist support and care from people trained to provide that.

“Sometimes opportunities run by people who have also lived with mental health difficulty and distress can be a better option, but many have closed due to lack of funding over the last decade.

“Without a lot of planning, community activities cannot, and should not, be an alternative to professional support. Severe mental illness really is severe.”

Social prescribing exemplifies a wider issue in mental health care: money is being put into services for folks with mild to moderate conditions at the same time as services for serious mental ill-health are slashed. Effectively, money is being transferred from the latter to the former.

One issue is that it overlooks what’s already there, including occupational therapists and social workers. This is the work they are trained to do and have been doing for years, and I don’t think they have even been consulted for their views. Recruiting low-paid link workers to signpost people is not equivalent to their expertise.

The main issue, however, is that social prescribing is being rolled out after a decade of cuts to core community mental health services. People living with long-term serious health problems – whether physical or mental – need long-term care, treatment and support. We are losing our specialist services while what’s on offer via social prescribing is inaccessible. We are being left high and dry.

Cutting care and support to people with the most serious health problems is inherently risky. People with severe mental ill-health already die 15 to 20 years early from preventable physical causes. Despite government announcements of increased funding for some specific services (such as perinatal mental health care), funding for core community mental health services continues to be cut and those services are being hollowed out.

Requiring people with serious health conditions to get sicker before any help is provided, and discharging people while we are still seriously poorly, is hugely detrimental. The result is people are forced to suffer needlessly and may never get back on our feet. How cruel. What a waste.

Nationally, just yesterday Health Services Journal reported that Early Intervention in Psychosis services – these are for seriously unwell people who are having their first experience of psychosis and urgently need help – had begun limiting access by raising referral thresholds, limiting the age range and discharging people earlier. This is a flagship policy in the government’s mental health plans and does not have sufficient funding to realise its targets.

I have experienced good care, and I know what a difference it can make. Before I moved here, I lived in an area where there were (formerly) multiple resources that supported folks who were living with serious chronic health conditions.

At the specialist day centre, as well as a range of fantastic activities, I could mix with people who understood, I didn’t have to try to ‘pass for normal’, could go whether my health was good or bad, and had the opportunity to volunteer. Equally important was support from the community mental health team, offering care coordination, medication, talking therapy, welfare benefits support and social care support; my GP practice; supported cooking classes; specialist mental health support workers; and supported exercise classes. Each of these was vital to enable me to manage my severe mental health problems.

People with mental ill-health require input that crosses services boundaries. The specialist and supported provision I received before had gradually enabled me to engage with a couple of mainstream activities – but it took a long time to build towards that, and there would be backwards steps during periods of ill-health when I would need to start from scratch again.

Being left with nothing but inaccessible mainstream activities aimed at the general public means that these days I have barely any interaction with the community. I am at home almost all the time. The only people I see are my support workers. I am further from health and the workplace than ever.

Social prescribing will not help me with that.

 

References:

[1] NHS England – Army of workers to support family doctors (28 January 2019)

[2] Health Services Journal – Trusts ‘limiting access’ to psychosis servicesHealth Services Journal – Trusts ‘limiting access’ to psychosis services (29 January 2019)

 

With thanks to Mark Brown for expert editing.

 

The above is the text of a piece I was commissioned to write for a national publication which I was told today would not be run. I didn’t want my efforts to go to waste!

 

Storify – Broken page links

12 Jun

Storify 2

.

Please note that, throughout this blog, I make extensive use of twitter conversations saved on Storify – I used that site for years to help me collate my thoughts and save conversations with others. Sadly, Storify closed in 2018 so those links no longer work.

However, I have saved all my Storify stories on another site, so the work is not all lost. What I haven’t done is go through the website replacing all the links. Therefore, if there are any particular Storify stories you would like to look at, contact me and I will see what I can do!

.

Storify 3

 

 

Dear All Pharmacists – On privacy and trust

23 Sep

.

.

I was so upset yesterday about a breach of my privacy at a pharmacy (not the first one) that I ranted on twitter – and it seemed it struck a chord with other patients. Pharmacists who responded were horrified by the breaches discussed. The conversation continued on twitter all day yesterday, and continued into today. I’ve captured all the tweets in the links below (“All tweets”), and have curated too:

.

Related links:

.

Some responses from patients on their experiences of breach of privacy:

 

.

.

 

 

 

#StateofMH

20 Jul

.

cqc state of mh 1.

On today’s report by the Care Quality Commission on the state of mental health care in the UK

.

Related links:

Documents:

.

Tweets:

.

.

.

.

.

.

 

 

 

.

.

Stay away

10 Jul

.

No visits till the meds kick in 1No visits till the meds kick in 2No visits till the meds kick in 4

No visits till the meds kick in 5

 

No visits till the meds kick in 7

No visits till the meds kick in 8

No visits till the meds kick in 9

No visits till the meds kick in 10

.

No visits till the meds kick in part 1 and part 2.

.

,

 

#MHQT

6 Jul

Here are all the tweets on the hashtag #MHQT from the panel debate and discussion on women and mental health at UCL on Wednesday 5th June 2017.

1) https://storify.com/SectionedUK/10-women-and-mental-health

2) https://storify.com/SectionedUK/2-mhqt

3) https://storify.com/SectionedUK/3-mhqt

4) https://storify.com/SectionedUK/4-mhqt

5) https://storify.com/SectionedUK/5-mhqt

6) https://storify.com/SectionedUK/6-mhqt

7) https://storify.com/SectionedUK/7-595d80759ddbba67e3a94e3f

8) https://storify.com/SectionedUK/mhqt-595d81909ddbba67e3a951ca