The NHS in England is receiving an additional £400m over four years, 2011-15, to increase support for carers but our report, published today, has found that the NHS has not increased the level of spending on services for carers from last year. Indeed, there might be a small decrease.
There has been progress in some areas where local primary care trusts (PCTs) are investing significant amounts, such as £2m, in services for carers in 2011/12. In these areas more carers will access breaks, receive training to help them manage their caring role, and specialist support for carers caring for somebody at the end of their life.
But there are still PCTs (4%) that are investing nothing in services for carers, with another 8% investing less than £100,000 this year. We need these PCTs to look at the fantastic work being done in places like Torbay, Bristol, Surrey and in the South of Tyne and Wear and see the benefits to carers, patients and the NHS itself that investing in carers can produce. Torbay has found that supporting carers has enabled smoother discharges of patients from hospitals, a key aim for the NHS and Dr Thomas, a GP and Chair of Torbay Professional Executive Committee believes carers are a top priority:
“Introducing Carers Support Workers in our practices has produced many benefits. It has facilitated early identification of people who are carers offering them practical and emotional support. As the population ages and more people live with long term disability the support for carers will remain a priority.”
The challenge for Government must be to ensure that with more new money being given to the NHS in 2012/13, the NHS uses it to support carers. I seem to have said this every year for three years but I do think Government will act to push this.
The Health Minister, Paul Burstow, is taking this report seriously and we met with him on Tuesday to discuss our findings. He will act to increase the expectations on PCTs, and on this he has the backing of the Prime Minister who had requested an investigation into how PCTs were spending the additional money.
PCTs are facing a particularly difficult year in 2011/12, including tightening budgets, but the Government has been clear about PCTs’ responsibilities regarding carers. But some PCTs are failing in their duty to carry out what has requested of them. For instance, only 13% of PCTs have published budgets for supporting carers when all were meant to by 2 September.
However, PCTs do not only have a duty to Government, they also have a duty to support those who sacrifice so much to care for others and a duty of care to their patients who are often relying on support from these carers. Too many are failing in this.
This blog post has been contributed by Will Davidson:
I’m Will Davidson, I have been volunteering with the Policy department at The Princess Royal Trust for Carers for the past two months, helping to research how government proposals will affect carers, especially on the issue of Carers Breaks.
Today we launched a report looking at whether Primary Care Trusts (PCTs) have been working with carers’ organisations to develop plans and budgets for carers breaks and if these plans have been published. Late last year the Coalition Government announced increased support for carers by allocating an additional £400m over 4 years to PCTs to focus on providing breaks for carers. They requested that each PCT works with local authorities and carers’ organisations to publish policies, plans and budgets to support carers.
So are PCTs following these guidelines set out by the Government? Do carers’ organisations feel more engaged now than they did before these announcements?
We found that only 9% of PCTs had developed updated plans and budgets for carers taking into account the additional money. 54% said that they would do so during 2011/12, and some very shortly. Carers will be disappointed that many PCTs are still developing plans eight months after the Government announcement and guidance. The remaining 37% said they would not be updating their plans.
For me, the most concerning finding is the number of PCTs still not working with carers’ organisations to develop plans and budgets. 82% of PCTs advised that they were working with carers’ organisations to develop plans and budgets, but carers’ organisations did not agree. 40% of PCTs were judged by carers’ organisations not to have engaged at all to develop plans and budgets.
Having minimal or irregular contact with carers’ organisations, or providing some funding for organisations connected to supporting carers does not in our view constitute real co-production of plans and budgets.
That said the examples in Sunderland and Richmond highlighted in previous blogs show that there is progress being made in some places, and we do think that more PCTs are now engaging with carers’ organisations and funding services than before. But the NHS as a whole has not made a breakthrough in supporting carers. PCTs must redouble their efforts, admittedly at a time of uncertainty for them, and Government must remember its’ responsibility and commitment to carers when considering its response to our findings.
You wait on one for ages, and then two come along. Not long after Sunderland PCT announced over £600,000 to support carers, NHS South West London and the London Borough of Richmond upon Thames have pledged £281,000 to give carers a break this year. Some of the projects funded will also provide counselling and debt advice projects, respite breaks for older carers and a mental health carers information project.
Unsurprisingly, there is a strong carers’ voice in Richmond with a Carers’ Forum that meets quarterly, an annual carers’ conference, a survey and a Carers’ Strategy Reference Group which brings together the council, the Primary Care Trust with charities such as Richmond Carers’ Centre and Crossroads Care Richmond. Caroline O’Neill of NHS South West London Richmond Borough Team was clear that working with local carers and carers’ organisations and influenced their decisions.
“We are committed to ensuring that carers are supported by both the health and social care services provided for them and those they care for. We are proud of our partnership approach working closely with local authority colleagues and local carer organisations to deliver for carers.”
This theme of local authorities and PCTs working with charities was also pinpointed by Melissa Wilks, CEO of Richmond Carers’ Centre:
“Strong local partnerships between Health, Social Care and the voluntary sector are vital to making a difference to carers lives. Richmond Carers Centre welcome this approach and the investment in short and long-term support for both adult and young carers.”
Both Sunderland and Richmond have strong local carers’ organisations and carers who are used to talking with local decision makers about the support that they need and how things can be improved. But there are some areas that do not have well-funded local charities doing this and there are some councils and PCTs that are not engaging with carers or carers’ organisations.
The Government’s idea of local communities being active in decision making is partly dependent on have strong local charities who are involved before decisions are made and finalised. Government has asked each PCT work with local carers’ organisations to develop plans and budgets, so we have been researching whether Richmond and Sunderland are the norm, or are just the exceptions.
We will be publishing our findings on Thursday 14th July and you can read about it here.
This blog was written by Carole Cochrane, Chief Executive at The Princess Royal Trust for Carers
Today is the first day of my last month as Chief Executive of The Princess Royal Trust for Carers. I have worked with and for The Trust for over 17 years so it is with a real mixture of feelings that I am writing this blog.
When I started back in 1994 it was to establish one of the first Princess Royal Trust Carers’ Centres. Those were such exciting times filled with hope and aspirations.
In 1995 we had the Carers (Recognition & Services) Act. This was the first piece of legislation that really recognised the role of carers, their needs and the benefits of ensuring they have support in their own right.
Malcolm Wicks MP did a great job pushing the bill through and I remember so well the feeling of elation that we now had something on the statute books about and for carers. I also remember a feeling of frustration that no money came with the Act. Good local authorities were already looking at ways to support carers!
I remember working with the head of the local social work team to train all their staff on the contents of the Act. This proved to be a brilliant opportunity to form real lasting relationships between the Carers’ Centre and the social work team, and between social workers and the carers who helped with the training.
I was extremely proud that following this training the Carers’ Centre was no longer seen as a place to avoid, but rather a place for social workers to turn to for information, advice and support. The Trust was able to grow and between us we delivered some real ground breaking support.
There have been a few significant pieces of legislation passed since then, including the Carers and Disabled Children Act 2000 and The Carers (Equal Opportunities) Act 2004, and I am sure there will be further development to ensure carers’ rights regarding access to accurate and timely information, emotional and practical support, and respite breaks.
Some things have changed for the better since 1994 but some have not. My fear as I leave is that in these austere times the much needed support for carers may get watered down and what I still to this day believe is a fantastic model of local carers support services will be diluted.
Having witnessed first-hand the difference our network of local carer services can make to the lives of carers and those they care for I truly hope that this is not the case.
Last year in the run up to the elections we saw all of the main party leaders speak about the need to support carers and of the fantastic work that carers do. Mr Cameron and Mr Clegg, remember your words and stay true to ensuring carers do have the support they need to fulfil their caring roles and be able to be full citizens of the UK.
Leaders of parties in Scotland, Wales and Northern Ireland must also prioritise carers and I know colleagues are working to push this in preparations for upcoming elections there.
So as I reach my final weeks with The Trust what will I miss? When my children were young and when I cared for my husband, work had to be around these very important roles so lots of part-time, evening and night working.
For the past three years I have spent most of my working week travelling and being away from home, and I know I won’t miss that. But I will really miss the camaraderie of colleagues, network members, and carers’ organisations that I have worked alongside to try to improve the lives of carers.
I will miss the engagement with carers. Meeting carers whether at Pontin’s when we did the carers breaks there; at Carers’ Centres or conferences and other events has always kept me both grounded and focused.
I will miss working with our President HRH The Princess Royal who I have found to be extremely supportive and knowledgeable about the cause, and incredibly hard working.
You cannot do a job like this and just walk away. Although I am not sure how, when or where, I do know that I will continue to watch what is happening and continue to do whatever I can to influence better support services for carers.
It’s the waiting that’s the worst. So say civil servants, local authorities and the NHS as they wait to find out exactly what the Government plans are. Carers are maybe more used to waiting.
They wait months for a hoist that will help lift a disabled husband out of bed. They wait for information and basic training to care for a daughter dying of cancer. They wait for a break from caring 24/7 for elderly parents who live with them.
Words are spoken and strategies published but for too many, the waiting continues.
I don’t think anybody should underestimate the scale of what new Government ministers have to learn and comprehend in a very short space of time. There are also lots of competing priorities to order but next week is Carers Week and it is time for carers to wait no longer.
I met Paul Burstow MP (new Minister for social care) on Monday. He told me that they made a firm pledge to increase access to respite care and they would deliver on it. Carers now need to know how this will be achieved and when.
I also met the new Labour shadow Minister for social care – Barbara Keeley MP. She has consistently campaigned for carers locally and in Parliament and worked on carers’ issues before entering Parliament. I also met her fellow shadow Minister for Health, Diana Johnson MP who has supported local carers and carers’ organisations.
The appointments of Burstow and Keeley are positive but this will not mean that all the policy changes carers need will happen instantly – or at all. But, I do believe we have two people who regularly meet, listen to and understand carers. The election is passed, new ministers are appointed and the waiting must end – it’s time for change.
We have known since February that this was likely to happen and have reported this to the Government at every opportunity in person and in writing. David Cameron spoke about it on GMTV during an expenses interview; MPs have questioned Ministers in Parliament (Stephen O’Brien and Simon Hughes, 13 Oct); and the media have covered it as a major issue. People are incredulous that a government can announce £50m will be given to support carers when in actuality they are giving £50m to PCTs to do with as they want and PCTs do not have to report if they have used any of the money to support carers.
The Government response is that local decision makers in PCTs know their communities best and are best judged to respond to their needs. Localism is currently very popular; national government should not decide everything as it is the people ‘on the ground’ who are most in touch and who know best. However, in terms of encouraging local democracy, local decision making is only one half of the equation. The other equally important aspect is that local people should be involved in decision-making and be able to hold local decision makers to account.
£50m was distributed among local PCTs without telling anybody how much each received as their share; it was simply included with their general budget. Lack of information is the first problem.
Despite us making these figures public, many PCTs did not involve carers and carers’ organizations during their spending plans for this money. Lack of participation is the second problem.
The Freedom of Information (FOI) Act requires public bodies to respond within 20 working days to requests, so we asked PCTs under this Act what they were planning to do with the money. Half did not respond within the 20 days, some still haven’t despite reminders and others responded with one sentence to seven questions advising “We do not currently hold that information”. Lack of transparency is the third problem.
The problems affecting the Carers Strategy is not a one-off issue. It pervades many areas of national government plans that are to be delivered by semi-autonomous local organizations. I see that Every Disabled Child Matters Campaign has released information about similar problems with money given to PCTs to support disabled children.
National government can either make announcements and take responsibility for ensuring delivery (even if it is local organizations delivering the change) or they stop giving false hope and make it possible for local people to hold local decision makers to account. This is not just an issue about carers; it is an issue about our democracy. But politicians should not forget that 5 million carers in England have suffered as a result.
This is our message when speaking with Ministers, civil servants, strategic health authorities, health regulators, local authorities and other charities to try and make sure that with £100m being given next year, some carers will actually get a break.
There are two reasons why I don’t like answering machines; firstly, I always tend to leave rambling never-ending messages and secondly the answering machine appears to mangle my voice in a cruel distortion. Or at least that is what I tell myself as I hear some dour, dulcet Scottish tones droning on. Despite my fear of these three Ds, I agreed to do two radio interviews last Friday (7th) about how Primary Care Trusts are not providing breaks for carers with monies given to them intended for this.
In April, English PCTs were given £50m among them to provide breaks for carers, but this money was not ring-fenced. Furthermore, PCTs were not told how much of the £50m each would receive; rather it was slipped into their total allocation without any information given. Unsurprisingly, some PCTs have been left confused, others deny that they have received any new money and only a laudable minority are pledging to spend all of their allocation on carers.
Given that the Government made a fanfare of committing new money to provide breaks for carers, the media smelled a story. BBC Radio Five Live Breakfast was first up and BBC Radio 4’s Today programme also covered it. The Guardian amongst others then picked it up for their website and the final request saw me being asked to appear on George Galloway’s Radio TalkSport programme at 10:45pm that night.
This was actually one of the longer interviews of the day and was followed by many people and carers phoning in to talk about this issue. One of the questions George asked me was why carers aren’t a stronger campaigning group given their large numbers. There could be a few reasons for this: not every carer actually realises they are a carer; carers are not a homogenous group but rather one made up of all ages and backgrounds; and finally that there isn’t just one magical answer to the problems facing carers.
However, carers should have a greater voice and as an election approaches, it is incumbent on us all to make candidates and political parties aware that people may actually choose to vote dependent on how they treat carers. A good place to start would be for any new Government to give detailed information and guidance to PCTs regarding next year’s £100m funding of breaks for carers, and ask them to publically report on their spending of it and what services they are providing to meet the needs of carers.
If they don’t then they could be subjecting the country to my dour, dulcet voice droning over the airwaves again. Surely nobody would want that?