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.


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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.


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.

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New impetus for dementia strategy is welcome

While most of the political world is focused on Ed Miliband’s speech at the Labour Party conference today, the government has quietly made an announcement that should give renewed hope to people with dementia, their families and carers; a renewed focus for the National Dementia Strategy.

It seems a long time since the strategy was launched in February 2009 amid much fanfare and talk of how it would improve care for people with the condition. What followed that was, well, very little, it seemed. Indeed, the National Audit Office was heavily critical of the implementation of the strategy – or lack of it – back in January.

While some thought that criticism was premature – one year into a 5-year strategy – little progress seems to have been made since, hence the new government’s re-fresh of it.

The Department of Health document Quality outcomes for people with dementia: Building on the work of the National Dementia Strategy highlights 4 main priorities:

  • Good-quality early diagnosis and intervention for all
  • Improved quality of care in general hospitals
  • Living well with dementia in care homes
  • Reduced use of antipsychotic medication.

The DH adds that the improvement of community personal support services is integral to and underpins each of the 4 priorities.

I can’t argue against any of those priorities, but carers, care service professionals and campaigners have been saying this for years.

There is also talk of developing an ‘outcomes-focused approach’ to dementia. ‘Outcomes-focused’ is an increasingly used phrase in health and social care and is starting to grate – isn’t all health and social care geared to delivering an outcome? I.e. improving the life of the service user? Or is it meant to stand for ‘as opposed to target-driven approach of previous government’?

However, cynicism aside, this is a major and welcome commitment from the government. For too long dementia has not received the attention it deserves from successive governments and, as a growing number of people develop the condition, it becomes an ever more urgent priority.

This annoucement has also gone down well with organisations in the sector, with the Alzheimer’s Society, the English Community Care Association and Counsel and Care all coming out in support of this.

But we have all been here before and as the original dementia strategy shows, good words and plans are one thing, but it means nothing if it does not deliver results for service users and their families.

My worry with this is that this could happen all over again. There isn’t too much detail in the document on how this will be delivered, although this is in part because the delivery strategy will be linked into the wider reforms of the NHS and social care, which will be announced in the coming months.

So, there is much to commend the revisions to the dementia strategy, but, as ever, words and intentions are one thing, but the real indicator of success will be in the implementation of this and tangible results for service users. So I’ll reserve judgement on it until later when – or if – the results can be seen among service users.

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Paying for social care

There are an increasing number of local news reports coming through of cuts being made to social care provision and charges for it being put up. Unfortunately, this is going to be repeated across the UK in the coming months.

 In the past day or so, 2 stories have come across my radar, both of which detail aspects of social care cuts in local authority areas.

 These are just taken at random and happen to be the ones that appeared in my inbox. There have been others over the past few weeks and there will be more to come, these are just to illustrate my point.

 Firstly, www.getwokingham.co.uk reported that Wokingham Borough Council has confirmed that it will no longer offer free services to people with savings of more than £23,250 and will introduce a £16.30-a-day charge for day care services.

Meanwhile, Community Care carried a story about Derbyshire County Council’s plans to save about £4 million a year by ramping up its eligibility threshold for social care services.

I suspect that many more councils will follow suit as budget cuts really begin to bite. The oft-quoted figure of 25% savings having to be found still haunts managers and commissioners in local authorities who will have to make some very uncomfortable decisions in the coming months.

I don’t wish to be the harbinger of doom, but, well, I’m going to be; these cuts could get deeper too. The comprehensive spending review, which sets local authority spending budgets for the next 3 years, is in October, and with cutting the UK’s deficit at the top of the government’s priority list, there are likely to be more cuts to come.

While many politicians claim that cuts won’t affect frontline services, it seems to me to be political flannel. Cuts of that magnitude will inevitably affect frontline services, as the 2 reports above show.

Currently 72% of council have their eligibility criteria set at ‘substantial’. Meanwhile, 24% will cater for people with ‘moderate’ needs and only 1% provide services for people with ‘critical’ needs, according to the Local Government Association and the Association of Directors of Adults Social Services.

I reckon that the percentage of councils catering only for ‘substantial’ or ‘critical’ needs will rise in the next year, which will mean that increasing numbers of people with moderate needs will be left out of the care system, unless they can pay for it themselves.

The government has talked about a focus on early intervention and prevention – which is to be applauded – and will help to keep people independent for longer. There is also a focus on those with the highest needs, as there should be.

But this leaves an enormous hole in the middle of people with moderate to quite complex needs who, unless they are lucky enough to live in an area that isn’t scrabbling around for every penny it can find, won’t be getting any services.

To me, there are inevitable knock-ons from this. For instance, without any care services, more people will end up with higher – and more expensive – needs faster than if they had got support earlier. It also puts more of a strain on carers, many of whom undertake the role without any financial support, or just for the Carers Allowance, which is still only £53.90 a week.

Not only this but services such as day care and meals on wheels, which are often vital lifelines, will also be cut back on.

I apologise if this makes for grim reading – I take no pleasure in writing it – but I can only see hard times ahead for everyone associated with social care. I doubt I’m saying anything revelatory, either.

But, to end on a positive note, if there is one thing the sector is good at, it is being resourceful. Social services, charities, third sector organisations and carers will always find ways to provide services that make a difference. This won’t stop because of local authority cuts.

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ContactPoint closes but what next?

At midday last Friday, somewhere, someplace, a switch was flicked and ContactPoint, the database of all 11 million children and young people in England, was no more. But what it is to be replaced with is still a mystery and this troubling.

ContactPoint was not exactly universally loved. Its purpose was to enable people in different services to access information about children that had been in contact with, but common criticisms included:

  • Being over-expensive – it cost £235 million to set up
  • Keeping records of every child, not just those in contact with social services
  • Being plagued with technical difficulties
  • Poorly updated
  • Data protection issues (how long before some of the information ended up on a laptop or memory stick got lost?)
  • Civil liberties issues – it was described as intrusive and disproportionate.

But despite all its faults, surely it would have been better to stick with ContactPoint until a suitable replacement had been found? Apparently not, according to the government, which is still thinking about what it wants to do next.

Currently, the government says it “continues to consider the feasibility of a new signposting service for professionals to help them to support and protect our most vulnerable children, particularly when these children move areas or access services in more than one area.”

This smacks of policy being made on the hoof, and another bit of cost-cutting – ContactPoint was apparently going to cost another £41 million this year – without getting proper plans in place to replace it.

I assume the ongoing Munro Review will have a say on what should replace ContactPoint. That is due to report back in April 2011, with an interim report preceding it in January. To me, after a proper period of reflection and assessment of what would make a better system, this would have been the time to end ContactPoint.

In terms of a replacement, professionals do need to be able to quickly see who else is working with a child, and when a child moves area, those picking up the case need to be able to easily see what has gone on previously.

Perhaps a system that only has records of children who have come into services, and that can only be accessed by a strictly-monitored group of professionals, would be considered. A ContactPoint Lite, if you will.

But that is only my opinion – it is the government’s that matters. And until such time as they do announce its replacement, I assume that professionals are back to where they were before ContactPoint was switched on in 2009. While in some areas there is good communication between professionals in different disciplines, in others, there isn’t. It is worrying therefore that there isn’t the safeguard of ContactPoint – despite its flaws – to fall back on.

This is why the government’s decision could backfire. If a child who has moved areas is killed before a new system is in place, then there could be some nasty flak heading the government’s way.

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Surprising statistics on Incapacity Benefit claimants

This statistic will be grist to the mill of those who believe that Incapacity Benefit/Employment Support Allowance claimants are just a bunch of scroungers: new government figures show that only 6% of those assessed for the benefit were deemed totally unfit for work.

Indeed, the Department for Work and Pensions press release claims that the majority of new applicants who undertook the Work Capacity Assessment (WCA) are fit to work.

But a closer look at the statistics shows that only 39% are deemed fit for work. It assumes that in those cases where the claim was closed before the assessment was completed (37%) the person is also fit for work. I’m not so sure; how many of those who dropped out simply couldn’t deal with the assessment process, for instance? It would be interesting to find out.

The figures for those deemed fit for work seem high; indeed, the Guardian notes that this is widely out of line of initial estimates made by DWP officials when the test was brought in.

So either many people trying to claim the benefit are not as ill as they were making out, or something is wrong with the test.

The test has had many critics since it was brought in to assess new claimants of ESA in 2008, including charities and service users, who, for instance, claim that it does not have the flexibility to take into account conditions that fluctuate.

For many claiming Incapacity Benefit, the WCA, along with the commitment to assess all existing claimants from October, rather than just new applications, has caused much stress and distress over the past few months. Some fear they may lose their benefits and be forced to look for work that is beyond them, or be stuck on the lower-rate Jobseeker’s Allowance.

But there is hope that things may change for the better. An independent review of the WCA was set up last month and is set to report back before the end of the year with proposals to reform the test. The scrutiny group for this includes Mind’s chief executive Paul Farmer, so it should represent the concerns of service users.

A call for evidence is also being launched today to gather information on the WCA from organisations and individuals, so there is a chance for service users with concerns to get their voices heard. I have no further info on this, but if I can find a link I’ll post it up.

There is nothing wrong with the principle of testing claimants to ensure that only those with a genuine need receive the benefit. But any test must ensure that it doesn’t exclude those who do need the benefit as well, especially those with mental health issues, where conditions can fluctuate markedly over time.

In its current form, the test appears to have problems; earlier figures on the number of successful appeals – a third of claims where people were initially considered fit for work were overturned – would seem to indicate this.

Hopefully this review will iron out those problems to ensure that only genuine applicants receive Incapacity Benefit/ESA – and in the process put an end to the erroneous ‘scrounger’ accusations that dog claimants currently.

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DLA changes worry majority of claimants

When the coalition released its emergency Budget in June, the introduction of medical assessments for all Disability Living Allowance (DLA) claimants from 2013-14, with the aim of only paying the benefit for as long as the person needs it, caused much consternation among claimants, their families and disability groups.

Now, the extent of that dismay is becoming clearer. It seems that nearly all people who claim DLA are very or quite concerned about the changes to the benefit being introduced by the coalition government’s Budget, according to a survey by the Essex Coalition for Disabled People (ECDP).

More than half (57%) of respondents fear that their DLA may be taken away under the new assessment rules and 1 in 3 respondents thought it unlikely they would be able to work as a result of the changes.

Nearly 6 in 10 (58%) respondents said the changes were likely to have “a big impact” on their everyday lives, including not getting the support they need (67%) and a negative impact on their family (55%).

For many people receiving it, DLA makes up a significant proportion of their income and is not spent on luxuries, but everyday things that enable them to live their life as they choose, including having a job and, in some cases, paying the bills.

Without it, life would become tough very quickly – they will still need the equipment/services DLA enabled them to buy but have less money to do it with.

Even more so if they were to give up a job because of it, as one respondent quoted in the ECDP report said; “Without my DLA I would lose my adapted car, my independence and my job. DLA supports me to contribute because it enables me to work full time.”

In addition, many service users are also concerned about the closing of the Independent Living Fund to new service users until at least April 2011– something that was not widely flagged when it was announced in May – more than 6 in 10 are very concerned by the changes, particularly around not getting the level of care and support they need (64%) or not being able to live independently (62%).

While this survey was only of 141 people, 93% of which were of working age – and 12% of which had a learning disability and 11% a mental health condition – it nonetheless provides an interesting snapshot of the overwhelmingly negative feelings about the changes.

To bundle DLA and the ILF into the drive to get people off benefits and into work misses the point of them. There is a suspicion among some that the government views DLA as an unemployment benefit, which it isn’t. Also, DLA is not a “scroungers” benefit – the assessment people have to go through in order to receive it is already rigorous.

Some people, such as the example above, rely on DLA to be able to work; to take it from such people and force them back onto benefits seems wrong.

This is something the government should investigate with urgency. Any changes to DLA should not be about cost-cutting, but ensuring disabled people have the means to be able to live their life as they choose and have the same life chances as their able-bodied counterparts. Many people believe the current changes do the opposite and could be disastrous for many people.

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