Tag Archives: NHS

Why we should give the Better Care Fund a chance

Today the National Audit Office published its verdict on the planning process for the first year of the Better Care Fund. Their report identified a gap between the scale of the Government’s ambitions and the quality of support originally offered to the NHS and local authorities.

While a lot of the coverage highlighted evidence that the Fund may not deliver the predicted savings for the NHS, the report also says it is a pioneering idea that will improve health and care services.

For Scope, the Better Care Fund can transform care for older and disabled people so they can live more independently.

The Fund is a crucial step in moving away from a system of costly acute care that only kicks in when people reach crisis point and towards preventative care close to home. It lays the foundations of an integrated care system and provides a real incentive for the NHS and social care services to work together.

A more integrated health and social care system would have significant benefits for disabled people, including:

  • Eliminating disputes over who should pay for care needs and fewer people falling between the cracks of health and social care funding
  • More choice and control
  • A more preventative care system which offers support before people reach crisis point.

If it’s successful the Fund will drive cultural change across the whole health and care system: that simply isn’t something that can happen overnight or before the plans have been implemented.

Of course the Fund can be improved in future.

So far the Government and local areas have mostly focused on joining up care for older people. That shows in the national guidance, performance measures and local plans for the first year of the Fund.

In future it makes financial sense for the Fund to have a much greater focus on the well-being and independence of disabled adults:

  • Disabled people under the age of 65 are one third of social care users
  • Over 50% of existing social care expenditure is spent on social care for working-age disabled people.
  • The number of working-age disabled people needing social care is projected to rise by 9.2% between 2010 and 2020.

It’s also crucial to remember that the Fund won’t help the growing number of disabled people with care needs who are not eligible for social care. Scope has long campaigned for the national eligibility threshold to be set at a lower level than proposed under the final Care Act regulations.

Without a lower eligibility threshold, disabled people with care needs will still be left without the vital support they need to live independently.

An integrated health and social care system cannot solve this problem on its own: the Better Care Fund must also be accompanied by a long-term investment in social care so that everyone who needs care gets it.

The Better Care Fund shouldn’t be seen as causing an NHS Funding Crisis – It’s helping to solve it

Newspaper headlines in the last two weeks have carried a number of stories about a funding crisis heading for the NHS. Common amongst these stories is the fact that they identify the transfer of NHS funding into social care as contributing to this ‘black hole’.

What is being referred to here is the creation of the ‘Integration Transformation Fund’ at the Spending Review in July 2013. Since then, it has gained the less technical title – the ‘Better Care Fund’ – in recognition of the Fund’s increased political importance.

Despite the change in title, the principle remains the same: this fund – totaling £3.8bn – is to be made available to Health and Well-being Boards to be spent on better social care for disabled and older people.

It is true that half of this money, £2bn, has been earmarked from the NHS Budget in a bold step that the Government has taken towards the hallowed ground of integrated health and social care services. It was a recognition of the obvious – that social care and hospital care are closely tied together, and we must start to think of them as such. An older or disabled person trapped in a hospital bed because they can’t get the support they need at home is perhaps the simplest illustration of how closely the systems are tied. Indeed, most patients just don’t know there is a difference in the first place.

As such, this £2bn doesn’t have to work hard for its place in the Fund. It’s important to remember that the Fund itself it not a straightforward ‘direct transfer’ from health budgets to social care. Health and Wellbeing Boards have to bid for this money – and there are tight national conditions attached. The most important of these conditions is that the money must be spent in a way that works for both social care and the NHS.

Another condition is that the money must be spent on care support that prevents unnecessary hospital admissions at the weekend.

In other words, by its very design, the Fund has to save the NHS money for it to even be allocated in the first place.

In both the NHS and in local authorities providing social care, there is considerable pressure to deliver more with fewer resources. With the core budgets of local authorities being cut by up to 40%, the social care landscape has had to adapt radically and quickly.

The Better Care Fund offers an incentive to both the NHS and to social care services to work together to innovate. It helps to lay the foundations for a much more integrated system of health and care.

And it must – by its very design – save the NHS money, not send it into financial ruin. If it’s not doing that yet, councils and health teams need to work harder together, not walk away. The government’s right – what’s at stake is better care.

Why do you want to label your child?

Guest blog by Lauren Roberts, Coordinator SWAN UK (Syndromes Without a Name).

Young girl in a push chair A controversial new book caught the headlines last week claiming that dyslexia is a meaningless label which holds teachers and parents back from helping children. The Dyslexia Debate claims that testing for dyslexia is merely a waste of time and resources.

While the book is talking specifically about Dyslexia, it raises a more general question that families are often asked – why do you want to label your child? The social model of disability says it is society that disables people, not their impairments. This is very true, but aside from the emotional need for a diagnosis that many parent seek, there are also some very real, practical reasons why diagnosis is important.

1. A diagnosis may offer a prognosis

People are often surprised to learn that around 50 per cent of children currently undergoing genetic testing through the NHS may never get a firm diagnosis. Without a diagnosis families have no sense of what the future might hold. They have no developmental charts to refer to, no idea whether their child will walk or talk, or even what their life expectancy might be. For parents of children with very complex medical needs, the first few months and years can feel like an endless search for answers.

2. A diagnosis opens doors

Boy smilingAlthough support should be based on assessed need, the experience of many families is that without a diagnosis it can be difficult to access support. Without a diagnosis it can be difficult to get people to take your child’s needs seriously – even if they have very obvious difficulties. You have nothing to write in the box on forms that asks for diagnosis and, in a time of budget cuts, a lack of diagnosis can be used as an excuse to deny support.

3. A diagnosis helps predict recurrence

Without a diagnosis it is impossible to test or predict the likelihood of the condition recurring. There is no way to know if future children or grandchildren will be affected – or whether siblings may pass the condition on to their own children.

4. A diagnosis may help direct treatment

Without a diagnosis it can be difficult to know what is the best course of treatment. Some children respond unusually to drugs and have undergone numerous surgical procedures without success.

5. Without a diagnosis you often feel like you don’t fit in

Mum hugging young boyFamilies of children with undiagnosed genetic conditions often feel they don’t belong with other networks or groups that offer support to families of disabled children. They dread having not having an answer for the ‘what’s wrong with them’ question.

SWAN UK (Syndromes without a Name) is an initiative of Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions. On Friday 25 April, we will be leading the UK celebrations of Undiagnosed Children’s Day. We’d love you to support us!

Find out more about our It’s a Mystery Day and how you can get involved.

Scope’s Face 2 Face schemes offer emotional and practical support and operate across the UK. Any parent of a disabled child may use their local scheme, even if your child hasn’t been diagnosed.

What is Britain saying about disability? Part 1: the dominant story

The game changers

Scope summary of research by Linguistic Landscapes. linguistic logo

With our next campaign we want to work with others to begin shifting attitudes towards disabled people for the better. Recognising the power of language and its influence on how people think and act, we wanted to build a comprehensive picture of how people – both disabled and non-disabled – are talking around disability.

As well as our research into public attitudes towards disabled people, we worked with Linguistic Landscapes (who have previously partnered with organisations including Oxfam GB, Prostate Cancer UK, the NHS and various companies) on a ‘discourse analysis’ – basically an analysis of how people talk and write about disability. They analysed over 500 texts from 2010 to now across the media, companies providing disability services, disability charities (including Scope) and campaigners, the Government, blogs, social media and elsewhere on the internet.

In this first summary of their research, it shows there is a dominant way of talking about disability that’s entrenched in Britain today. The main narrative that’s out there – accidentally or intentionally – says that disabled people are seen as passive, homogenous not individuals, separate from ‘normal’ society, hopeless and voiceless.

Passive

      • Things happen to disabled people by others. Movement is a common metaphor and also disabled people being described as recipients: “changes to social security aren’t helping disabled people, they are pushing them into poverty” ; “how on earth they had justified throwing disabled children to the wolves”
      • Many tend to talk about rather than to disabled people:
        “they/them” not “you”
        “more than 100,000 disabled people are or risk soon being denied vital care and support”
        The voices of disabled people themselves are less evident in the mainstream than voices speaking about disabled people.
      • Where disabled people do themselves speak, there is often limited visibility of their impairment
        Disabled people’s voices appear mainly in writing, on the radio and only more recently on TV. This is partly why Paralympics was so radical by showing disabled people visibly and prominently.

‘Other’: separate or different from the mainstream 

      • Disabled people are often put with other marginalised groups
        “Sick and disabled”, “Old and disabled”, “The poor and disabled”, “Women, children and disabled people”, “BME, women and disabled (students)”.
      • This powerfully sustains an invisible norm that’s taken for granted, the ‘normal’ are the able-bodied, the unimpaired, men, straight people, white people, the non-poor etc.
      • Disabled people are overwhelmingly featured as the exception
        “Those with a disability are twice as likely to live below the poverty line – and more likely to be victims of crime”
        “Disabled people are more likely than non-disabled people to experience material deprivation”
      • Common metaphors of war and survival reinforce the sense of difference
        “parents battling for support”, “barely surviving”, “war on welfare”

 Homogenous: a mass group 

      • Stripping away people’s individuality – when terms like “disabled people” are used a lot, the person is defined only by their disability and they can lose individual characteristics , even as to whether the disabled person is an adult or child. There is very little about important aspects of pleasure, like humour, relationships and sex.
      • Stories of individuals are powerful but unfortunately too often these are negative, e.g. individual ‘benefit scrounger’ stories. These have particular power when people have little understanding of the wider group of ‘disabled people’. 

Work and individual responsibility: a massive topic

      • Not working is immoral – A recent and now major context for many conversations related to disability is work, for example in politics and the media. It is a moral discourse where you are only valuable – and ‘normal’ – if you are in employment.
      • The ‘benefit scrounger’ narrative fits within this, where being passive (not working) combines with being separate (different from the majority of hardworking people), combines with individual stories.

Some of the other findings showed that disabled people are often described as special and vulnerable, in an inevitably negative situation and permanently disabled with little understanding of the nuance of people’s impairments.

What do you think? And what are the alternatives?

The end result of the language we all use isn’t necessarily intended – often it can just be unthinking.  Because there is such an established way of talking about disabled people, most people won’t question it most of the time. But seeing it laid out here sparks thinking: is this the picture we want to paint or a different one?

Please comment below or tweet with the hashtag #ScopeGameChangers.  

We have now published the second part of our findings – some of the alternatives to the dominant narrative and hope for change. Let us know what you think.

Six talking points from the Spending Review

Young disabled man outdoors with personal assistant

1. Do you want the good news or the bad news first?

Good news? Okay… the Chancellor has announced a £3.8 billion investment – including £2 billion of new money – in social care: the support disabled people get from their council to get up, get washed and dressed, and live independently.

The official document says, “This shared pot includes an additional £2 billion from the NHS and builds on the existing contribution of around £1 billion in 2014–15, with the aim of delivering better, more joined-up services to older and disabled people, to keep them out of hospital and to avoid long hospital stays”.

Here’s why this cash is welcome. The social care system is on its knees. Cash-strapped councils have been upping the bar for support eligibility, with 83% of councils now setting the threshold at a higher level. According to London School of Economics 69,000 disabled people have been pushed out of the system.

At the same time councils are squeezing the support for those that are in the system. A Scope survey found almost 40% of disabled people who continue to receive social care support are not having their basic needs met including eating properly, washing, dressing or being able to get out of the house.

Take away the preventative support and people fall into crisis. Have a listen to Angela Murray explain why social care is so important to her.

2. The ‘how’ is really important

Given that we now also know that councils are facing a further 10% cut in their budgets, a crucial piece of detail is how the cash gets to frontline social care. ADASS have said that previous injections of cash have instead disappeared into the black-hole of council budgets.

The documents talk about pooled budgets and NHS money being made available to councils through ‘local health and care systems’, which – in an exclusive for the HSJ – Jeremy Hunt explains will be achieved through Health & Wellbeing Boards. A cross-part panel of MPs and Peers recently argued that this would give it a better chance of reaching the people that need it. The official document explains that the Government is “putting £3.8 billion in a single pooled budget for health and social care services to work more closely together in local areas, based on a plan agreed between the NHS and local authorities”.

3. Britain Cares about social care

Today’s spending review announcement follows six months of campaigning. The innovative Stephen Fry-backed Britain Cares campaign, has seen over 25,000 people contact their MP about social care for disabled people – a thousand of who have sent personalised photos to show they care.

At the same time a young disabled woman from Luton – and former volunteer of the year – Angela launched a petition on Change.org which has received more than 45,000 signatures. She handed it in to 11 Downing Street on Monday.

4. But don’t celebrate just yet

The crucial question is now who gets care and who doesn’t. The announcement comes as the Care Bill is debated in the Lords over the coming week. The reforms seek to tackle the crisis in care by introducing a cap on costs, a new means-testing threshold and national eligibility to end the postcode lottery in care.

But under the current  plans – reiterated in the Spending Review – the Government will raise the bar for eligibility to social care to a level which London School of Economics (LSE) says will leave 105,000 disabled people with significant needs outside of the system altogether. They need that support to live independent lives. Without it, they are left isolated and in crisis.

5. And the really bad news…

The Government was briefing that there would be no further cuts on welfare. But that’s exactly what a cap on so-called Annually Managed Expenditure could mean. AME is Government spending which includes welfare and state pension bills. The Government is capping about half the budget. The Chancellor confirmed this will definitely include benefits for disabled people.

This means that regardless of how many disabled people need financial support, if the public finances take another nose dive, the Government could pull the plug on support for disabled people just when they really need it. This is ludicrous. Some disabled people will always need financial support. It doesn’t make them scroungers or skivers.

6. But let’s end on a positive note

The Chancellor committed to continue to spend £350m on employment support for disabled people. This mainly funds Access to Work and Work Choice. This support is especially important when you consider the growing consensus that the Work Programme (not linked to this funding) isn’t effectively supporting disabled people and ESA claimants. This will come to a head when the DWP publishes performance statistics for the Work Programme on Thurs June 27th.  It’s becoming ever more clear we need new solutions for getting disabled people into work.

With every Spending Review there’s is a lot to take in. But at a time when the Government is bringing in £11.5bn of cuts, an investment of £3bn into local support for disabled people is certainly good news.