End of the chemical cosh long overdue

Finally. Here is a government announcement that is years overdue: the use of anti-psychotic drugs for people with dementia must be cut by two-thirds by November 2011.

After many years of campaigning by carers, patient groups and some in the medical profession, the government has finally taken action – something the previous administration should have done years ago.

Prescribing anti-psychotic drugs to people with dementia who have behavioural problems – also known as the ‘chemical cosh’ – has long been a scandal with health and social care. Newspapers have regularly carried stories on loved parents who have been turned into “zombies” by these drugs, usually administered against the family’s wishes.

What is more surprising to me is that evidence of the harmful effects that these drugs can have on people with dementia – including shortening their lifespan – has been available for some years, yet the practice continued unabated. The simple fact that they are not licensed for long-term use by people with dementia should give a clue here – if they had benefits for the majority of people, then surely there would be recommendations to prescribe them. Seems blindingly obvious, you would think.

While anti-psychotics do benefit a minority of dementia patients – hence why there is not a complete ban – they are often prescribed for their sedative effects on people with dementia with challenging behaviour.

This is where the biggest change needs to come; in the culture of dementia care. There is still an over-reliance on drugs – from GPs and care staff – and this has to be challenged, and this directive will give much-needed focus to it.

But it is no good just cutting out anti-psychotic drug use. What also needs to happen is an increase in training for carers, care home staff etc in dementia and its effects, and in non-drug related treatments and therapies, such as reminiscence therapy, that can help people with dementia.

I know of several dementia care homes that pride themselves on being ‘drug-free’ (within reason) and there is no reason why this shouldn’t be an industry standard. As usual, best practice is out there and it needs to be disseminated better. Good practice needs to be shouted from the rooftops and demonstrated at seminars, conferences and in magazine articles and journals.

Finally, a bit of credit where credit is due: Paul Burstow has made good on the commitment he made while in opposition to tackle the anti-psychotics issue.

Indeed, while the government has come in for heavy criticism for its social care policies and proposals in recent weeks, this is one policy they should be congratulated on. Now it is up to GPs, care home staff and carers to make good on this.

Comprehensive spending review: little for social care

The months of rumours, leaks and speculation are over; the Comprehensive Spending Review has finally been announced. As expected, for social care, it does not make for fun reading.

Here are some of my immediate thoughts, based on Chancellor George Osborne’s speech and a (very) swift look at the spending review document. While the review obviously affects everyone in some way, I’m going to try to focus on the impact it could have on people with mental health issues and/or learning disabilities.

Firstly, it should be noted that there is very little geared specifically to people with learning disabilities and/or mental health issues. For instance, specific mentions of ‘learning disability’ (or disabilities) does not get one mention and ‘mental health’ only 2. I didn’t expect there to be; today is the day for grand statements, with the detail to come at a later date.

In terms of what was said, while Osborne promised an extra £2 billion for social care in the next five years, including £1 billion to aid joint working between health and social care, he mentioned that this would help older people – no mention of adults with disabilities.

Also, BBC health reporter Nick Triggle worries this could be more or less cancelled out by the increasing demand of the aging population.

Meanwhile, benefit reform will ensure that it “always pay to work”, according to Osborne. Benefits are to be capped at no more than the average net wage from 2013 – which will work out to about £500 per week for couple/lone parent household and £350 per week for single adult households – although people receiving Disability Living Allowance are exempt from this.

However, this may well hit people on incapacity benefit/Employment and Support Allowance and other benefits, especially those who are moved onto Jobseeker’s Allowance from ESA. The focus of the welfare reform is evidently on people getting jobs, with benefits cut to make it more of an incentive to work.

There is also a new 12-month time limit proposed for the one million people on ESA in the Work Related Activity Group to find work or face having their benefits cut.

But surely this will be dependent on the jobs being out there for people to take? Many people on ESA would like to take up jobs – part or full-time – but with many businesses not looking to take on employees, and the public sector set to shed 490,000 jobs, there are precious few available and competition for them will be fierce.

The reforms to housing benefit will also hit many people with learning disabilities and/or mental health issues, especially those living in London and the southeast, where property prices are generally higher than in the rest of the UK.

Potentially, the adverse impact of money worries on people with mental health issues or learning disabilities could be immense, as could the upheaval of having to move, if they now cannot afford the rent on their homes. For someone to have to move away from an area they know – including a network of informal support – to somewhere new could have a disastrous effect on a person.

Not all bad news

But the CSR wasn’t all bad for social care; there were a couple of positive notes from the Chancellor.

Firstly, personal budgets are to be extended to people with long-term health conditions, children with disabilities and special educational needs and adult social care. The commitment to personalisation is welcome and, for some people, personal budgets have made a tangible positive difference to their lives. Giving more people the option to do this is a good thing. Whether their budget will be enough to do this is another matter.

Likewise, the commitment to increase talking therapies for people with mental health issues is also to be welcomed.

The government is also going to take forward proposals to invest nationally in mental health liaison services at police stations and courts to intervene at an early stage, diverting mentally ill offenders away from the justice system and into treatment. However, it does carry the caveat ‘subject to business case approval’.

Nevertheless, this is a good move. Far too many people with mental health problems get stuck in the justice system and opportunities for them to access treatment are often lost.

Conclusion

From an initial assessment, people with learning disabilities and/or mental health issues do not fare well out of the CSR, especially in terms of welfare and housing reform. However, I don’t think anyone – regardless of who they are – fares well out of this review.

But there are some crumbs of comfort, especially with expanding personal budgets and talking therapies, although they are probably outweighed by the cuts.

However, to paraphrase Winston Churchill, this is not the end, it is not the beginning of the end, it is the end of the beginning. Next month, government departments will set out business plans to outline how they will implement cuts. This is where the real detailed information about cuts will come at a local level, and we will all find out which departments, services, projects, charities etc will retain funding, be closed, or face hard times.

NHS reform – impact on social care

Andrew Lansley’s much-vaunted white paper on the future of the NHS was published yesterday afternoon, promising widespread reform, including the abolition of PCTs and SHAs and giving commissioning power to GP consortiums. But what will it mean for social care? Here are a few of my initial thoughts.

Firstly, there are concerns that the reforms focus on general services and that people with learning disabilities, mental health problems and dementia have been largely ignored – this came through strongly on Twitter yesterday, from what I saw.

To test this, I did a quick word search of the white paper to gauge how many times certain phrases were mentioned; mental health is mentioned 8 times in the 61-page document, Alzheimers or dementia receives one mention [as @seetheperson pointed out to me], and learning disability – or learning disabilities – never crops up.

To me, this is shocking. Considering that people with learning disabilities, dementia and mental health issues make up a significant chunk of those that use NHS services, the lack of attention given to them is a worrying omission.

Specialist services are often a lifeline or those who use them and an acknowledgement of this – and preferably a commitment to give them at least some degree of protection – would have been reassuring to the many service users who are already distinctly nervous about what government cuts will mean for services.

Hopefully the government is planning for learning disability and mental health services separately…

Also, do GPs, who will now have power over which services are commissioned in their area, have the specialist knowledge that is often required in MH/LD to be able to give an authoritative view on what sorts of services are needed? Mental health charity Mind’s chief executive Paul Farmer has already questioned this and called on them to talk to experts and “tap in to the personal knowledge of patients and mental health charities about what works.” 

There is also cynicism over whether GP commissioning will work from some within the profession. For example, the GP for hire blog gives a distinctly lukewarm reaction to the proposals, saying it will put more pressure on salaried and locum GPs, and could lead to divided interests for those doctors involved on a consortium.

Also, will GP consortiums not exacerbate the postcode lottery, which was supposed to be got rid of? If commissioning a service depends on the decision of the GP consortium – a group of individuals with their own opinions – surely there is the risk that one consortium would approve it, but the one next door would not.

It hardly improves patient choice if they find that their needs are rejected in one area but available in another.

But there were some good points in the white paper. For instance, it talks of promoting the joining-up of health and social care services and promoting preventative action. I can’t argue with that principle – health and social care are closely linked, so that is a no-brainer and could help to reduce duplication of information and bring about efficiencies. Also, preventative action is generally accepted to reduce the need for costlier, more complex services down the line.

The white paper also says that the government’s vision for adult social care will be outlined later this year, and indicate that it will be a continuation of the current personalisation drive towards choice and control for service users. A white paper will follow next year. Nothing new there, but it is good to have the timeline in place.

In conclusion, the government’s reforms are certainly ambitious, but they are also risky. Social policy think-tank Civitas has warned that considerable resources will be needed to enact the restructuring – I’m not sure how that sits with the aim of saving £20 billion by 2014 – and if it is got wrong it could lead to a dip in the NHS’ performance for at least a year.

That will be the acid test of these reforms – will it make services better for service users? I’m sceptical, but only time will tell, as ever with any reforms.

This white paper provides so many points for discussion so it is more than likely that I will blog on aspects of it again later in the week.

The future for social care programmes?

Last Friday I blogged on the government’s axing of the Caring with Confidence programme, and how on an initial reading it seemed to make little sense. But comments since then from care services minister Paul Burstow have explained more about the decision – and given a hint as to future policy direction.

Burstow, as reported in Community Care has justified the move to end Caring with Confidence by saying: “We were not getting value for money from the delivery. Not enough carers had been through the programme, and there was no evidence that delivery would accelerate significantly.”

Whether that is accurate or not is a moot point. But this statement may tell us more about future policy direction when it comes to social care programmes: if they can demonstrate they are providing value for money, they will be safe, if not – watch out for the axe.

Now, once upon a time I was a business journalist, and I used to regularly interview entrepreneurs who would explain that a project or an arm of a business had been closed because it wasn’t providing value for money. Their priority was the bottom line and if it wasn’t contributing to it, and showed little sign of doing so in the future, then it would be axed, more often than not.

That’s fair enough in business – they exist to make profits – but in social care, it is a whole different ball game.

In social care, investment in a project may not provide demonstrable fiscal returns; it is often a lot more subtle than that. For instance, how do you quantify the value for money for someone taking part in a mental health project? It may aid their recovery and wellbeing but does it provide value for money? How do you judge? Is it whether they are able to get a job at the end of it and therefore can come off benefits and start paying tax?

It’s not an easy call to make; social care projects often provide intangible benefits to those that use them, and in these cases it is generally more important than any financial returns.

In fairness to Burstow, he has added (again according to Community Care) that the money from Caring with Confidence will be reinvested in other carers’ projects, including a training programme to raise GPs’ awareness of their role in supporting carers. He has also said that Caring with Confidence materials will be available free to carers’ centres that want to carry on the work.

Nevertheless, Caring with Confidence will not be the last project to bite the dust in the coming months. The government is making difficult decisions and with the cuts coming – said to be 25% of local authority budgets – it is inevitable that some social care programmes will be axed.

There are projects out there that are not doing what they were set up to do well enough and need to be weeded out, but there are many more that do and should be protected. Government and council leaders will need to examine each one very carefully and assess the benefits it gives to service users before deciding which should be cut and not just make a decision based on financial data.

More funding needed for mental health research

While Homer Simpson may have said “people can come up with statistics to prove anything”, there are some occasions when bald numbers do tell their own story. Mental health funding is one of those.

For instance, according to a review by the Medical Research Council, mental health is estimated to cost £77 billion each year in England alone. It accounts for 15% of all disability due to disease and affects 16.7 million people in the UK at any one time. Yet only about 5% – £74 million – of medical research budgets are dedicated to it per year.

Professor Til Wykes from the Institute of Psychiatry at King’s College London hit the nail on the head in a recent BBC piece, saying that mental health research is “incredibly underfunded”

This seems especially so, given that mental health problems affect more people at any one time than cancer or heart disease – both of which receive more funding.

Given the statistics, it is hard to argue with Prof Wykes. Whether this relative lack of funding is down to stigma or the fact that mental health is not a “sexy” illness is debatable, but at least there are moves to challenge the situation.

For example, in its review, the MRC has outlined the priorities for the research community for the next 5-10 years:

• Focus on the prevention of mental disorders based on better understanding of causes, risk levels and new approaches to early preventive measures
• Accelerate research and development to provide new, more effective treatments for mental illness, and implement them more rapidly
• Expand the capacity for research in this area in the UK.

The MRC will work with funding agencies such as the Economic and Social Research Council, the National Institute of Health Research and the Health Departments of the devolved administrations on approaches to take forward these recommendations, but whether more funding will be forthcoming is debatable.

The logic for more funding is hard to argue against – basically, more research would lead to better and more effective ways of preventing and treating mental illness, thus reducing the burden to the country and saving money – but the financial state of the country may dictate what happens.

With the Department of Health looking for savings, research budgets look set to be slashed for many areas of healthcare – although not dementia – so any large increases may be out of the question, although an increase in real terms may be feasible. Whether that is enough is another matter – it may be another case of innovative work having to be done with fewer resources, which could hold back the pace of development – to everyone’s detriment.

Welfare reform plans worry disability groups

As the new government starts to get itself into gear, one of its key policies seems to be welfare reform and getting people into work – but getting it right, especially for people with disabilities or mental health problems will not be easy.

The idea of welfare reform and ending dependency on it is good – and some would say long overdue – but it has to be ensured that it is fair, especially for people with disabilities or mental health problems who are currently receiving Employment and Support Allowance (ESA)/Incapacity Benefit (IB).

While most people with disabilities or mental health problems want to either return to or gain paid employment, some are not capable of it. Others are capable, but only perhaps certain jobs or part-time hours.

However, the Work Capability Assessment, which determines if someone is capable of work – if they are deemed capable, they are moved onto the £25-a-week lower rate Jobseekers Allowance rather than ESA/IB – is flawed, some groups claim.

For instance, Neil Coyle of the Disability Alliance, calls the Work Capability Assessment ‘unfair and ineffective’ in today’s Daily Mirror.

Meanwhile, Paul Farmer, chief executive of mental health charity Mind, says “the current test is not up to the job of measuring whether people with mental health problems are fit for work.”

The test was trialled among new claimants at the end of 2008, and involves rigorous medical assessments carried out by an independent company. Of the 500,000 tested, only 9% remained on ESA. This test is now set to be rolled out to all 2.6 million claimants.

But this worries Farmer, fearing that people with mental health problems will be incorrectly assessed. “We urge our new Government to review the benefit assessment… so that people aren’t deprived of their benefit and forced to look for work they can’t do.

“Work can be good for mental health, but only when it is suited to the individual. The Government has proposed to sanction anyone turning down ‘reasonable offers of employment’, but people should not be forced to accept work that risks damaging their mental health, putting them back on benefits and back at square one. Sanctioning people who can’t secure an appropriate job misses the point about why they are locked out of work in the first place.”

There are other wrinkles in the government’s plan to get people into work; we are just coming out of a long and deep recession and jobs are scarce and very competitive – 2.5 million people are unemployed remember.

Despite all the efforts of various schemes to tackle stigma against people with disabilities, it does still exist; two thirds of employers are unwilling to offer someone with mental health issues a job, according to Farmer.

A solution that is fair for everyone will not be easy, but if the government is to stick to David Cameron’s quote that ‘that those who can should and those who can’t we will always help’, then this needs to be got right and concerns from such groups need to be considered, to avoid the problems that could arise from trying to get people into jobs that are not suited to them.

Budget – predictions for social care

What will be in today’s Budget for social care? In the words of magician Paul Daniels, “not a lot”.

The focus has thus far been on stamp duty, fuel duty and measures to help business and stimulate the fragile recovery. It will also be setting the stage for the financial/economic debates in the forthcoming election. Social care hasn’t really had a look in.

From what I can glean, reading around various predictions and what has come from Whitehall so far, the only measure that will directly affect people in receipt of social care is a possible rise in benefits.

While the rises are only expected to be small – 2% on pensions, 1.5% on other benefits – at least the government hasn’t stuck to its usual formula of basing the raise on the RPI inflation rate; last September it stood at -1.4%.

However, I suspect these rises won’t be met with much joy. With the cost of living increasing at the moment – notably food, utilities and fuel – the raise won’t cover it.

Elsewhere, I wonder if the Chancellor will make any reference to the proposed National Care Service or the white paper on adult social care funding – rumoured to be published this week – in his funding plans.

There has been very little mention of this in the pre-Budget build-up, but if the white paper is coming, the Chancellor may give some pointers when he outlines where funds will be going in the coming months.

I will be watching the Budget with interest and will blog and Twitter on this later in the day.

EastEnders bipolar storyline helps tackle stigma

I’ll make this clear at the outset; I’m not a fan of EastEnders. My wife is, and I occasionally take a passing interest in it. Honest.

But there is one storyline that has really piqued my interest in the past year or so; Stacey Slater’s gradual development of bipolar disorder.

For those who aren’t regular viewers, Stacey’s behaviour became gradually more erratic over the summer, before a final climatic breakdown and sectioning in full view of the residents of Albert Square late last year. The character has since had treatment and returned to the Square.

Lacey Turner, who plays Stacey, has garnered much praise for her portrayal of the character, from TV critics and mental health organisations alike. At the National Television Awards last night she won the best serial drama performance award to add to several others she’s already won in the past few months.

But there is much more to this than Lacey Turner needing to think about buying a bigger trophy cabinet; there is evidence that it is helping young people with bipolar disorder to seek help and tackle the stigma associated with mental health issues.

MDF The Bipolar Organisation says the number of young people calling its helpline has doubled in the past 6 months, from about 400 a day to more than 800. It believes this is mainly down to the Stacey Slater storyline, according to a report on the BBC’s Newsbeat website.

In addition, the BDRN (Bipolar Disorder Research Network) said that within 48 hours of the EastEnders Revealed episode of Stacey being bipolar they had 8,536 visitors to their website.

This is also a long-term commitment from EastEnders; Stacey Slater is now pregnant, and to coincide with this, MDF and BDRN are focusing on bipolar and pregnancy, to hopefully further attack the stigma around the condition.

It just goes to show that soaps can be much more than just TV escapism. If they tackle big issues well – EastEnders’ scriptwriters have worked extensively with mental health charities such as Mind to ensure that the storyline is as true-to-life as possible – they can bring about real change.

I’m still not going to admit that I like the show, though.

New Horizons for mental health service users

Continuing the pre-Christmas rush to release big and/or important documents – last week brought us the Social Work Task Force final report and the CQC’s adult social care review – today the government launches its new 10-year strategy for mental health, New Horizons: A Shared Vision for Mental Health.

A quick skim through the 100-page document reveals a few key themes to the strategy, including;

• Improving the mental wellbeing of the entire population. The inclusive nature of this strategy, to me, will help to bring down the stigma of mental health issues, which still looms large. Also, prevention is easier (and cheaper) than cure
• Early intervention, including treating mental health problems in children and adolescents, with such things as counsellors in schools. Many children with depression go undiagnosed and often go on to have mental health problems in adulthood, again, prevention is better than cure
• Getting people with mental health problems back into work – this can really help with self-esteem and bring people back into ‘normal’ society and also reduces the cost to the taxpayer in benefits
• Linked to this is a campaign to tackle mental health stigma. This is needed to help ensure the other 3 points are successful.

Thus far, the response from mental health organisations has been positive. Paul Jenkins, chief executive of Rethink said it could (note: could) ‘revolutionise the quality of life and care available to people affected by severe mental illness’.

Meanwhile, Mind’s chief executive Paul Farmer has described it as a ‘turning point’ for mental health and welcomed the focus on prevention and wellbeing.

However, Farmer also noted that there is, as yet, no action plan for making the vision of New Horizons become a reality. There are action points in the document, but they are light on detail. He also added that in many areas basic mental health services are still lacking and this should not be ignored.

This hits 2 large nails on the head; government strategies often sound impressive and it’s easy to get carried away and think how good things will be, but ignoring how it will get made into reality, and such documents can also distract from what’s happening (or not) on the ground that needs to be addressed urgently.

So, while the strategy has many of the right elements in it to make genuine strides in improving the care and wellbeing of people with mental health problems, only when the action plan is in place – along with guarantees of funding, or at least no cuts to it – will it be worth getting properly excited about.

Breaking sport’s mental health stigma

It is the illness that dare not speak its name. Mental health has traditionally been one of sport’s great taboos; nobody talked about it, and those who did risked ridicule and career suicide.

For instance, footballer Stan Collymore was openly ridiculed by his then manager John Gregory and the press when he sought treatment for depression in 1999. When boxer Frank Bruno was sectioned under the Mental Health Act, the ever-sensitive Sun ran the headline ‘Bonkers Bruno locked up’ – although this was changed in later editions.

It’s no wonder sports stars keep things bottled up. Admitting to a perceived weakness in the macho world of sport is just not done; they could be considered unstable or unreliable by managers, and opposition players and fans would ruthlessly use it against them.

The tragic death of German goalkeeper Robert Enke demonstrates an extreme conclusion of this stigma and the fear of its effects.

But Enke’s death may prove to be a turning point in addressing mental health stigma in sport – and more widely. The story was reported around the world and gave people an insight into the mind of someone with depression.

This was followed last night by an Inside Sport special on BBC1. The programme took a considered look at mental health problems in sport – including high-profile cases such as cricketer Marcus Trescothick and Bruno.

The programme eschewed sensationalism and gave them time to explain how they feel when they are suffering problems and – just as importantly – how they manage it and now lead ‘normal’ lives again.

The fact that these two, and others, such as Serena Williams, Neil Lennon and Ronnie O’Sullivan have ‘come out’ and admitted to having mental health problems is helping to slowly break down the stigma.

It shouldn’t be surprising that sportspeople suffer mental health problems, because the pressures must be intense; coping with the expectations of coaches, fans and the media; trying to be the best in the world; dealing with the highs and lows that sport brings; keeping at the peak of physical fitness, for example.

After all, they aren’t superhuman. While some may be fabulously remunerated for, essentially, playing games for a living, it doesn’t change their basic human nature. Money doesn’t make you happy.

While Robert Enke’s death shows how deeply ingrained the stigma of mental health problems – or fear of stigma – still is, people are beginning to understand more about it and that it is an illness and not simply a case of someone ‘pulling themselves together’. Today, Collymore and Bruno would be viewed much more sympathetically, including by the national media.

Programmes like Inside Sport, and idolised sports stars admitting their problems, will help to change attitudes. It may be a long, slow process, but it is changing and hopefully that will mean that there will not be more cases like Enke in the future.