A better future for mental health care: acceptance, choice and dignity

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Part of Time to Think Differently

So it is time to think differently. As an ambassador for the Time to Change mental health awareness campaign I am all in favour of that. I'm all in favour too of echoing the theme of Christina Patterson's recent piece about shifting power back to patients, but that is a tricky issue when you are talking about people in a mental health crisis. I mean a real crisis, when the mind is scrambled, the meltdown is happening, and it is hard to allow or expect the person at the centre of that crisis to make lots of rational decisions. This is when talk of rights, choice and control tends to go out of the window. Sometimes, that can be understandable. But it doesn't always have to be so. There are still ways of respecting the knowledge and views of the patient in crisis. Sometimes it happens. Often it does not.

Crisis tends not to happen suddenly. There are warnings; there is a build up. If the warnings and the build-up are spotted, then hopefully preventive action can be taken. You won't be told (effectively or actually) to go away until you're really ill or imminently suicidal. If you know what helps and what doesn’t, this will be trusted as valuable expertise and will shape the care you receive if and when crisis comes. In fact you'll have a crisis plan that you’ve negotiated with your care team and signed off yourself that sets out what you want to happen and where you want to go when you’re in crisis. It won't happen in every set of circumstances. But it could happen in many more situations than it does now.

This may sound obvious, but Mind's crisis care inquiry found that too often people are turned away and struggle to get help. Their crisis calls may go unanswered or they are told they are not ill enough to qualify for help. But the fact that they are there at all means they could be well down the road towards crisis already. Too few people have a crisis plan, and those who do are often not involved in deciding it, or say it is stuck in a filing cabinet and rarely referred to. The Care Quality Commission prioritises care planning as something that needs to improve for detained patients.

In a better future vision of health care, your definition of your own crisis will count, and the plan you have co-written will determine the care you get. The benefits of peer support from other people with experience of mental health problems will be obvious and the people providing it will be valued as equals by other health care workers. Alternative models of service that are massively valued by the people who use them – including Leeds Survivor Led Crisis Service and Maytree – will spread rather than being rare and isolated examples. It’s an overused term, but with the right changes, the postcode lottery of good access to crisis care beyond hospitals will end. And when you go into hospital or other services you’ll be treated with courtesy as a welcome guest. Boredom, insecurity and abuse on wards will be a thing of the past. Cultures of restraint will be replaced by respect and dignity.

How do we get to that vision? This is partly about health service cultures, but wider society sets the tone. Attitude change – underpinned by law – is fundamental. We need to see mental health as being about 'us' not 'us and them' – to end the stigma and discrimination. There is still a long way to go, as the three-quarters of people with a mental health problem who lost friendships as a result know too well, and those who lose their jobs – or never get one – because of it know even better.

But there is hope too. For instance, last year, MPs in Parliament and Assembly Members in the Welsh Assembly spoke about their own experience of mental health problems. They didn’t know when they took that step that their colleagues and the media would respond warmly. The fact that their stories were so well received shows that as a society we are slowly moving in the right direction.

Parliament is important but it isn’t in people’s daily lives the way that employers are. When it comes to helping people understand mental health and how to look after it, employers have a big part to play. Creating a mentally healthy and open workplace where employees feel supported enough to discuss a problem – that’s another marker of progress that is good for business as well.

Which brings me back to the staff–patient dynamic in health care. The NHS is a huge employer and its staff are rightly expected to care for people using clinical skills, respect and kindness – often in very high-demand situations, which in mental health settings include the risk of self-harm or suicide. If we expect people to be kind and empathic in their work, that is how they should be treated by their employer too. If we want staff to work in partnership with patients, respecting their wishes and knowledge of their own needs, they should feel safe enough to discuss their own mental health. And if a small organisation like Leeds Survivor Led Crisis Service can provide staff with supervision, reflective practice groups, experiential training and individual wellbeing budgets we should expect the NHS to support its frontline staff just as well.

The NHS should have been at the forefront of the Time to Change campaign – as an employer not just as the main provider of services. They are getting there – but as with the rest of the country, the journey is too slow, and too long, and the time for change is now.

Alastair Campbell is a writer and strategist best known for his role as former British Prime Minister Tony Blair's spokesman, press secretary and director of communications and strategy.

This blog is also featured on the Health Service Journal website

Comments

Lindy Petts

Position
independent business consultant,
Comment date
23 January 2015
Mental health treatment in the UK is shocking and whilst the NHS is in meltdown as a whole, there seems little chance of this clandestine, antiquated system changing. And yet change it must if we want to ever improve the overall health and wellbeing of a so called civilised society. The quantifiable and hidden costs of not treating mental health problems at an early stage are so clear, resulting in drug and alcohol abuse, self harm and self neglect leading to injury and illness, and obesity with all its resulting disease. Days and months can be lost from work or study. If investment opportunities are tight, there needs to be focus. For me, this would be on younger people, whose lives can become so blighted at an early stage; psychiatric and psychological (especially the latter) services available at walk in centres and GP practices, and quickly; far higher quality standards and training for so called home 'treatment' teams (these are often very low capability workers in my experience); government investment in good quality counselling training and grants available to encourage practitioners; refurbishment of low standard mental health units which are often bleak, frightening and boring places; compulsory retraining of psychiatrists in therapeutic processes to get away from their over reliance on the pharmaceutical industry; a professional development path which enables para professionals (eg senior nurses), rather than medical practitioners, to practise in the psychology/psychiatry overlap space; investment in more specialist units that can cope with mental disorder rather than mental illness - eg anorexia, depression, anxiety related disorders rather than lumping everyone into one type of unit with disastrous results; support for Units such as Max Glatt eg merging non profitable (but highly successful) units where treatment packages could be integrated; performance management processes for mental health workers which actually measure behaviour; integrated treatment planning (medical, mental health, social care) at an early stage with the GP as the lead care planner; commissioning panels and GPs trained in mental health - types, effects, treatments, outcomes; all GPs, mental health workers, psychiatrists having to spend a week as an inpatient in a mental health unit; a move away from the mental health profession's obsession with 'assessing' (and avoiding action) with time limits on assessment processes - I could go on. I would like to know how I could become involved in campaigning for better mental health?

Rachel Battersby

Comment date
22 October 2013
A friend of mine is currently being detained against his will under section 2 of the Mental Health Act when he is clearly not ill. The ability for relatives and doctors who are not familiar with a person to section the formerly ill under this section is highly inappropriate. He is not a danger to himself or anyone else. He isn't currently ill. And yet he was made to go to hospital where he cannot have a shower in public or have access to clean clothes, marched there by 4 police officers, a doctor and CPN with a locksmith threatening to break in and take him by force with no justifiable reason other than his sister having a hissy fit because he refused to see her. Sane people would refuse to see the poisonous bitch with her determination to have her own way (whilst whining like a little girl). Should anyone who doesn't like their relatives now be detained? This section of the Mental Health Act needs to be immediately abolished as it is a licence to treat anyone who has ever been mentally ill as if they have no rights whatsoever. He hasn't needed help for more than 10 years - though of course when he did need help he couldn't get it. Now he's well, he's forcibly detained with strange men urinating next to him whilst he showers, and yet again people in real need will not be able to get any help whatsoever.

Sarah Tucker

Position
Digital Communications Officer,
Organisation
The King's Fund
Comment date
29 April 2013
Hi Rai

Please do get in touch with these organisations who may be able to help:

Patients' Association http://www.patients-association.org.uk/

Mind http://www.mind.org.uk/

Sane: http://www.sane.org.uk/what_we_do/support/

Centre for Mental Health: http://www.centreformentalhealth.org.uk/index.aspx

Sarah

Rai

Comment date
29 April 2013
I have been begging the NHS for help for 20 years but get very little. I have now lost my job due to a breakdown and have very little support. I am waiting for yet more therapy - hopefully this time I won't be humiliated and sent away with no hope. Even a suicide attempt did not give me any more help from my GP etc. I was simply looked at as if I was disgusting and naughty.
This is my last hope of help. My life is in pieces.

susie

Position
post - doctoral researcher,
Comment date
26 March 2013
Dear Alistair,

I agree with all your comments and keep my fingers crossed that things do change but it's not looking good. I think that there are lots of problems with the NHS's attitude to mental health and have for sometime now being researching the ward environments in which service-users are treated. These are poor and badly need to be looked at so vulnerable are treated like human beings not animals or criminals. This I fear is emblematic of attitudes towards mental health more generally. I suggest we start here - the locus of treatments.

peter patrick …

Position
ukip health activist,
Organisation
cott campbells ozone therapy trust
Comment date
21 March 2013
as i head to our ukip spring exter conference this weekend , my thoughts are to do battle with our present nhs on alzheimers and dementia care , especialy as my wife is responding to my alteretive care like www.edskilling.com www.bobbeck.com we must open the doors of truth regarding cure for this evil illness ? there is much that can be done , like microchip bracelet on all patients , my wife went missing last christmas in a snow storm? but with grace of god she was found safe and well in a school nearby my home ? many are now going a missing and not being reported by the media or police ? there are many cures and its for our nhs to let the public know ? the rule of the nice and medical mafia is coming to end ? like poison chemo , and locking our loved ones in care homes to waste away until death ? this is not on, www.petercampbell.faithweb.com i had a meeting with our cheif scottish medical nhs officer on january 25th 2013 , my freind and i still awating his report back to us , know matter how much we phone and try to get an answer back ? why is he avoiding ?...we will cry wolf for the truth to be known ? god bless peter campbell ukip skys the limit mobile 07906877404 or 01475803529

Jane Moore

Position
Dementia Alliance Co-ordinator,
Organisation
Camelford Dementia Action Alliance
Comment date
17 February 2013


DEMENTIA PATIENTS AND THOSE WHO DO THEIR BEST TO CARE BUT WHO ARE NOT SUPPORTED.

Thousands of dementia patients, suffering, frightened and bored sitting in carehomes, waiting to die and feeling cheated out of their last years on this earth.

How can we let this continue?
People should not be “dying from” but trying to “live well” with dementia.
Dementia patients do not have the capacity to occupy their time because of a diseased brain and for many just one word a day from another human being is all they can look forward to. Time must be spent with people with dementia, helping to allay boredom by pointing the way and helping with occupation of time. Therapy, activity and entertainment are at the core of alleviating anxiety, depression and boredom which create anger, frustration and distress. Care equals compassion and empathy. Because of dementia’s confusion, special needs must be met. More regular interaction for psychological support must be given together with assistance to occupy time. To promote contentment in dementia, a declaration of likes and dislikes should be insisted upon from family, friends and carers (i.e. what time main meal is taken; liking for hot drinks and meals; what that person has done throughout their life) To this end families must play a greater part in the care of their relative to support staff in carehomes.
Some prisoners have a better quality of life. Bastoy Prison in Norway supplies exercise, fresh air, outings to the beach and occupation.

How does one address the failing system of so called “care”?
Families feel they cannot complain because homes may close, they may face a ban or their loved one could be moved. Homes are understaffed, and carers won’t complain for fear of losing their jobs.
The National Dementia Strategy for England Objective 15:
Improved registration and inspection of carehomes:
CQC are failing to identifying activities and occupation at carehomes and should increase staff ratios for coping with dementia. CQC are failing dementia patients. It’s not enough to just talk to dementia patients to find out if they are happy – they lack the capacity to understand. Many elderly deaths are connected to low self worth and loss of the will to live. I have heard people say:” I just want to die”.

This is a barbaric treatment of our elderly. If a child or a prisoner was treated this way, there would be an outcry.

Southwest Dementia Partnerships suggest that 6 out of 10 homes have little or no provision for meaningful activity. We lock people away from life. We have consigned our elderly to a safe but stagnant existence.
Dementia patients need leading into activity.
We need more staff provision, better staff awareness training and better outdoor spaces.
Staff in carehomes are asking for more than basic dementia training. Training should include how interact compassionately and in the proper way with a dementia patient.

End of life care should be re-thought with particular attention being paid to the transition to unfamiliar places which increase confusion and families should be more aware of the decisions they may have to take.

---o0o---

Mini-mental State Examination (MMSE) needs updating and unification. Different test are at present carried out all over Britain and questions should be the same and truly reflect ability of a dementia person.
The Board of Directors of Torbay – South Devon Healthcare NHS Trust have agreed to take up the challenge from Torbay Dementia Action Alliance. They will be using the purple angel logo and are making changes to their test questions in consultation with a dementia patient. The same set of questions should be used throughout the country and I am asking Cornwall NHS to collaborate with Devon Healthcare and at least get unification throughout the South West.

Camelford Dementia Action Alliance

Susannah

Comment date
15 February 2013
Alistair I share the vision but with little optimism. The crisis led organisations are phenomenal and I have used Maytree. But they won't get expanded or funded until mainstream MH services are willing to accept that the expertise does not always lie with them, that alternative models of crisis care are valid and that the individual living with serious MH problems is the real expert on what they need. I submitted to Mind's Crisis Care enquiry and attended parliament to present to MP's and Peers.

We live in the same locality and apparently within a 5 star CQC service.
However try accessing crisis care at night and you will find that when you telephone the crisis team they wont have time to talk and simply tell you to go to A&E. They also will not talk to someone not known to them so if that is your first port of call when you are suicidal forget it.It;s a way of rationing services to seriously vulnerable people.

Compare that with the Samaritans who manage to support people with very severe complex issues - not just depression -and will talk for an hour and in daytime see people face to face. Statutory services seem to have very little knowledge of non statutory services in their area and an unwillingness to find out. Possibly because the voluntary services are seen as competitors.

Add in to the mix that those with severe MH problems often can't access therapy in or out of statutory services because they are considered too unwell, too at risk and lacking internak resources and you get a picture of why in our borough the suicide rate is consistently the highest in the country.

MH services are about 20 years behind mainstream medicine in accepting the concepts of autonomy and choice. There is little dignity involved and very little collaboration with patients/service users, Until they grasp these concepts, accept the role of the critical friend and are better regulated nothing will change.

peter patrick …

Position
ukip health activist,
Organisation
UKIP SCOTLAND
Comment date
13 February 2013
HI ALISTOR MY WIFE RECENTLY DIAGNOSED WITH DEMENTIA ? I AM PRESENTLY TREATING HER ELECTRO MEDICINE PRODOCOL OF WWW.EDSKILLING.COM AND BOBBECK.COM BRAIN TUNER OF WHICH SHE SEEMS TO BE RESPONDING , MY FRIEND AND 76 YR OLD SCOTTISH CHAMPION WEIGHT LIFTER GEORGE BYING MET OUR SIR HARRY BURNS REGARDING WHO WAS AMAZED BY OUR EFFORTS TO HELP OTHERS , NOW AWAITING HIS REPLY ? LET ME KNOW YOUR COMMENTS ?

peter patrick …

Position
ukip health activist,
Organisation
cott campbells ozone therapy trust
Comment date
03 February 2013
my friend and i recently had a meeting with our head chief medical sir harry burns nhs in glasgow , regarding setting up of bobbeck.com and edskilling.com my youngest son and daughter barbara recently died from cancer and mental illness through not there doing ?...but our failing uk nhs not following world medicine regarding electro medicine ? were it is fact cancer and alzhiemers are being cured in japan russia etc my aim as ukip with there support will hope to change these failings , awaiting feed back from sir harry ?

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