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.

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.

Social care funding commission has 2 options

This blog was originally going to be about how unhelpful the newspapers’ focus on the Commission on the Funding of Care and Support’s decision to not automatically discount bringing in a “Death Tax” was, but since I started writing, the government has ruled it out completely, according to Community Care.

This isn’t a surprise, to be honest. Firstly, the government would want to defuse criticism from the newspapers that saw this as the Conservatives back-tracking on their stance from the election campaign.

But in any case, since it was christened the “Death Tax”, that idea – a compulsory levy on estates after death – would have been impossible to implement because of the backlash from the press it would get and the image it has in the public’s eye. Whether or not it was the best option is a moot point.

But on the upside this should help bring about a more reasoned debate in the media on what the funding options are – no more tub-thumping headlines screaming about the injustice of the “Death Tax”, for instance.

Many people do not understand the social care or benefits systems currently, so a clear setting out of the current regimes, along with an explanation of all the options being considered and their relative merits/downsides would be good.

Not that there is that much to cover now. Currently, there would seem to be 2 options realistically on the table; a voluntary insurance scheme and a partnership of state finance and service user finance. A system completely funded by users or by the state was ruled out by the last government and has hardly been mentioned by this one, so I think we can assume those ideas aren’t really being considered.

So, it seems as if the commission’s job is to decide which of the 2 options – or slight variations on – is better.

Considering when this last went out to consultation there was no consensus on which option was best, they have a tough job ahead.

So how does the commission decide? Perhaps they should get Harry Hill in – “There’s only one way to find out…”

What does Big Society mean for social care?

Today saw the launch of the much-vaunted ‘Big Society’. The Big Society is David Cameron’s Big Idea and “Big Passion”. His vision is for services to be provided on a more localised level – as an antidote to Big Government. So, all in all, this is big. Here are my initial thoughts.

The theory behind Big Society is great – getting people more involved in their communities, everybody using their own skills helping each other to provide the services they want and need, such as the Post Office or transport services – and it is hard to argue against that. It is almost a (whisper it) socialist ideal.

But, like many policies that are great in theory, the practice will be somewhat different.

One of the main tenets of the Big Society is enabling charities, social enterprises and voluntary organisations to take over the running of public services.

Already, many social care services are provided by the third sector – such as day centres, mental health recovery programmes and meals on wheels – and have local authority contracts to do this.

Some of these organisations rely on volunteers to ensure they keep running – from helping to serve tea at a day centre to driving a care home minibus on a weekly outing – and it is, in a way, an example of how the Big Society already works. That isn’t the problem.

This is: how much more can the sector take on? Many volunteer organisations find themselves crying out for more people to join them – is this going to change under the new government directive?

While many people like the idea of volunteering, few do it. To use a current marketing buzz-phrase, many people are ‘time poor’ – or to you and me, busy – and feel that they can’t spare the time. Others may not have the skills required. Or, perhaps more obviously, some people won’t be bothered or willing to do it because some people just don’t like the idea of working for nothing.

For me, this is one of the major sticking points of the Big Society; getting enough people to not only buy into its ethos but also to take part in it. When the social care sector often struggles to get good people into the workforce when it offers to pay them, I’m doubt that they’ll get them voluntarily.

There are other aspects I am sceptical about. One of the examples being quoted is the pub in rural Cumbria that is being bought and run by the locals, with 105 of them stumping up £1,500 each to take a stake in the pub. OK, this is a great example of how it can work (hence why it’s being used) but will this happen in a run-down inner-city area, for instance? How many people in a housing estate have that sort of money knocking about?

This can be applied to social care – would enough people get involved to, for example, run a day centre? Especially in rural areas, where there is a smaller pool of potential people to help.

I also have a nagging feeling that this is just a back-door way of making cuts and saving money by giving the running of public services to volunteer organisations, which, by their nature, employ people who aren’t paid for their work – much cheaper than civil servants and council employees. David Cameron has denied this, but then he would, wouldn’t he?

Maybe I’m being over-cynical. There are some great social enterprises out there, and things like hyperlocal websites where local people are getting together and making a difference to their communities. Doubtless this policy will create more of these, which is great, but I doubt it will provide the change in society that David Cameron envisages.

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.

Social care providers worry about maintaining service quality

These are worrying times for service users, carers and families involved in social care; with the uncertainty over service provision, eligibility criteria, benefit cuts and future policy all causing stress. Now, care providers are adding to that by saying that services may get worse.

A survey published last week by accountants PricewaterhouseCoopers (PwC), Fair care crisis? An independent survey of social care providers for the elderly,  found that many care home and domiciliary care providers are worried about the effects of cutbacks on service users, and have warned that some have ‘unrealistic expectations’ of the services they receive and ought to revise their expectations downwards.

Providers said a key challenge is maintaining the quality of services against a background of rising costs and downward pressure on fees. Indeed, 80% worry that quality of care services will suffer due to cost reduction measures.

While it has to be remembered that these are the views of care providers, who are always going to say they need more money – the majority want a fair fees policy for local authority commissioners, for instance – this survey nonetheless highlights some of the current concerns among the sector.

Respondents also fear that smaller providers may go out of business because of cost pressures, which could lead to reduced choice for service users – so much for the increased choice and control promised by the personalisation, it seems.

OK, that’s the scary part over with. The survey also had some positive messages; 97% feel they are equipped to meet current or future challenges and 94% are already taking action to address market challenges.

Of those taking action, 83% are increasing skills and capacity – meaning better-trained staff – but 78% are controlling costs, which can be a double-edged sword, depending on where the cuts come.

This survey provides an interesting snapshot of the mood of social care providers. While there is optimism about meeting the future challenges, it is worrying that some say that service users should not expect so much of them.

While this may be realistic talk from providers – if you know how to do more with less please tell me – it does not augur well for service users; it seems they will face increased eligibility criteria, fewer services, less choice and less care.

The uncertainty in the sector is also not helping. The survey notes that 79% of providers want the government to outline its vision for the future of elderly social care, but they are likely to be disappointed. While there may be some measures outlined in the plans for the NHS today, for the definitive standpoint I imagine we will have to wait until the independent commission on the future of adult social care reports back sometime in the next year.

Only when policy is confirmed, along with budgets – we’ll find out what local authorities have to spend in October when the comprehensive spending review is announced – will providers be able to plan with certainty, and therefore give service users a better picture of what services will be provided – or not, as the case may be.

While PwC’s report closes on an optimistic note from a business point of view – many expect to cope with the future challenges and see opportunities in an expanding marketplace – I can’t help feeling that the outlook for service users, their families and carers is much more pessimistic.

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.

Carers caring more but do the government?

An interesting juxtaposition of carers news over the past couple of days; firstly, the percentage of carers providing 50 hours or more care a week has more than doubled in the past 9 years; meanwhile, the government has axed the Caring with Confidence programme, a support package for carers worth £4.4 million a year.

New statistics from the NHS Information Centre reveal that 5 million adults in England – nearly 1 in 8 – act as a carer for a sick, elderly or disabled person, with more than a fifth providing care for more than 50 hours a week.

Today, 22% provide care for 50 hours or more, compared to 10% in 2000-01. Also, nearly half of carers (48%) provide 20 hours or more of care a week and 30% provide 35 hours or more.

These figures are based on 2 surveys of more than 37,000 carers; the Survey of Carers in households – 2009/10 England – Provisional Results, and Personal Social Services Survey of Adult Carers in England, 2009/10, so it’s fairly in-depth.

So with this in mind, it seems odd that the government has chosen to close the contract for the Caring with Confidence programme – a scheme designed to improve support for carers – in September, rather than March 2011, as was originally planned.

Care services minister Paul Burstow’s justification for cutting Caring for Confidence is that the money used in the scheme could be “spent smarter” elsewhere. He didn’t elaborate on how, other than to say that he plans to offer more support to carers’ organisations and for carers’ training.

However, given that supporting carers and giving them training is – was – Caring with Confidence’s raison d’etre, the decision makes even less sense, especially as it was coming to the end of its government funding early next year and, anecdotally, was making a positive difference to carers’ lives.

It seems like the government is trying to make quick savings to cut the financial deficit with this decision, and it flies in the face of its manifesto commitment to support carers.

Hopefully Burstow makes good on his words and this is not a sign of things to come for carers, otherwise the Personal Social Services Survey of Adult Carers survey’s statistic that 17% found their quality of life was either “bad, very bad or so bad it could not be worse”, could increase in years to come.

Incapacity benefits claimants worried by threat of cuts

These are nervous times for incapacity benefits claimants; with more rigorous testing coming for Incapacity Benefit and Disability Living Allowance, there is also the threat of more cuts to come later in the year.

Earlier this week, Chancellor George Osborne hinted that benefits which the government had not given specific commitments to protect would be part of a summer spending review aimed at cutting the deficit – although exactly what form this may take has not been elaborated on and work and pensions secretary Iain Duncan Smith has since tried to play down reports of cuts.

Nevertheless, it all amounts to a worrying time for disabled people. There have been several blogs in the past week by people who fear for their future or are angry at the nature of the changes, such as Emmanuel Smith in The Guardian and Dawn Willis.

Already Incapacity Benefit – and its successor Employment Support Allowance – has been in the firing line for some time, with new claimants having to go through more stringent checks with the work capability assessment since before the election. This is set to be extended to all claimants next year.

The government reckons that about one in 5 people on Incapacity Benefit – about 500,000 – are fit for work.

Some people – the much talked about “benefit scroungers” – who do play the system that will be found out by this, which is good.

But the vast majority of claimants are legitimate – 500,000 erroneous claimants seems high to me – and the Citizens Advice Bureau reported in March that the work capability assessment has found seriously ill and disabled people fit for work, including people with Multiple Sclerosis and severe mental illness.

There are several potential negative effects of taking people off Incapacity Benefit and onto Jobseeker’s Allowance. For instance, not only will income be reduced – and many disabled people are not well off to begin with – but, for people with mental health problems especially, the stress could harm their recovery.

The targeting of DLA is also serious; the new assessment seems designed to get people off it.

Indeed, there is a feeling among some commentators that the government has misinterpreted what DLA is. The Guardian’s Anne Wollenberg pointed to the government’s state of the nation report, which noted that “…around 2.2 million people, including 1.1 million people of working age, have been claiming disability living allowance for over 5 years”.

As Anne says, DLA is not and never has been an unemployment benefit; it is there to support people with the extra costs associated with disability – usually a long-term condition – such as wheelchairs and care services.

For many claimants, DLA is essential to their quality of life and if they were moved off it, life would become very tough very quickly – they will still need the equipment/services DLA enabled them to buy but have less money to do it with.

All these measures are wrapped up in a drive to get people off benefits and into work. While this is a laudable aim, there are problems. For instance, the UK is just coming out of one of the longest recessions of recent times and jobs are scarce, with 2.9 million unemployed and another 1.3 million set to lose theirs due to the measures in the recent Budget, according to news reports today.

The struggle to get work is often magnified for people with disabilities. Even though there is anti-discrimination legislation, I would be willing to bet that many employers would still choose an able-bodied person over someone with disabilities – although few would admit as much and may do it unconsciously.

I could go on. But it is clear is that life could get very tough for some people with disabilities or mental illness in the coming months and years if the government goes ahead with its plans.

Postscript: The government has now announced an independent review of the methods used to assess incapacity benefits claimants’  fitness to work and will report back by the end of the year.

Would increasing NHS spending cut social care services?

Interesting stuff from shadow health secretary Andy Burnham today, as reported in the Guardian, who claims that increasing NHS spending could adversely affect social care provision.

Burnham objects to the government’s commitment to increase NHS spending in real terms year on year; “If they persist with this councils will tighten their eligibility criteria even further for social care. There will be barely nothing left in some parts of the country, and individuals will be digging ever deeper into their own pockets for social care support,” the Guardian reports him as saying.

As a cynical journo, my instant reaction is this is just a way of scoring a few cheap political points before the emergency Budget next Tuesday. And it probably is – but he does make a couple of salient points nevertheless.

It has struck me as odd that the only department with a guarantee of an increase in spending – amid swingeing cuts for everyone else – is health, especially at a time when the NHS is performing relatively well – if you take meeting the majority of targets as ‘well’. It smacked of a sop to the electorate – increasing health spending is always a vote winner.

Also, while there is nothing to say that the increase in NHS spending will come from the social care budget, there is nevertheless an element of robbing Peter to pay Paul with the Conservative commitment too – its reasonable to assume that increases in one department will mean that others gets cut. There are no spending commitments for social care (that I know of), so cuts in this area would seem inevitable.

Burnham also notes that putting the NHS in a stronger financial position to social care would make joint working – the current prevailing trend – harder to achieve.

Also, cutting social care could increase the burden on the NHS if more people end up in hospital due to falls etc due to struggling without care services they need because they cannot afford them. They could stay there longer if there is not the social care provision – meals on wheels, housing, care services etc – to support them in the community on release.

But whatever happens in next week’s Budget, it would seem the future for social care is an austere one; at a local level, there are already news stories of cutbacks in services, or charges for them increasing. To pick one example at random, here is a story from the online version of the Northampton Chronicle & Echo about county council proposals – currently out to public consultation – to raise £600,000 by increasing the cost of social care services.

Northampton County Council justifies this plan by saying that without the increase in charges, services would have to be cut.

This is a situation repeated across the country. It would seem that social care providers and service users are going to have to do more with less. How the government – and local authorities – will deal with this will be interesting to see. All should become clear in the coming weeks.