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.
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.
I need to ask you a favour.
In 2009,The Labour government did a good thing by including £50m in allocations to English Primary Care Trusts (organises your local health services) to increase support for carers. In 2010, they included £100m. These were good policies let down by poor implementation as our research showed only 25% of the total £150m was used to increase support for carers.
The new Coalition Government has built on the good policy by including £400m over 4 years in the allocations to PCTs to focus on providing breaks for carers. They have also requested that each Primary Care Trust works with local authorities and carers’ organisations to publish policies, plans and budgets to support carers. This is important because it means PCTs can be held to account for how they spend the £400m.
But this is where I need your favour.
In this era of local decision making, it is local people who must hold PCTs to account. It is local people who must ask their PCTs whether they have spoken with carers and carers’ organisations about providing breaks. It is local people who must request to see the PCT’s policies, plans and budgets to support carers. And if you don’t get answers from your PCT, write to your MP and councillor or visit them at their surgery and explain to them why you are concerned that your PCT is not doing what it should to support carers.
It doesn’t matter if you’re not a carer, I still need this favour from you. And with one in ten people currently providing care and three in five people becoming a carer at some point in their life, it is likely that whether your PCT uses this money to support carers or not may affect you or your friends and family now or in the very near future.
I, and over 5 million carers in England, need your help to persuade PCTs that breaks for carers are not a luxury; that they are desperately needed by people who sacrifice so much to care for others that they often reach breaking point, jeopardising their own health and are simply crying out for some help and a break.
Yesterday in Parliament, we launched a campaign supported by MPs from all parties called Give Carers A Break. Our website has information on this campaign and how you can get involved.
Please, help us to give carers a break.
Note: The following first blog post of 2011 has been written by Carole Cochrane, Chief Executive at The Princess Royal Trust for Carers
I was extremely fortunate to spend the two weeks of Christmas away on holiday. After a scary drive to the airport my husband and I were delighted when the airplane was finally de-iced and we were able to take off leaving the snow and madness of the holiday season behind us. What struck me whilst on the holiday was just how many people were at the hotel who were obviously carers away with the cared for and in some cases the family.
There was a young mum Chrissy who was on the holiday with her 10 year old son who was severely disabled, Chrissy was also accompanied by her mum. When her son had been younger she was offered lots of respite – more than she needed she told me. However, now her son was older and heavier to carry respite was almost non-existent and she now relied on her mum and a few good friends.
Chrissy’s son is tube fed and the rucksack with the feed was constantly on the back of his wheelchair. Chrissy told me that some airlines charge extra to transport the 25 kilo of feed she needs to bring away with her. She told me that the room they had been allocated was fully accessible and indeed they had selected the hotel and the resort on recommendation of its accessibility. Chrissy explained that the key to her getting away was planning, planning, planning and of course saving hard to pay for the break.
Chrissy’s mum was obviously incredibly close to both Chrissy and James but I couldn’t help wondering what will happen as she herself becomes older and not able to offer the support she currently does.
I got chatting to a young carer Elsa who was on the holiday with her mum who had suffered a stroke, like many young carers Elsa never strayed far from her mum’s side, always making sure she had everything she needed and I saw her keeping an eye on her, even when playing in the pool with other children. They told me this was a rare treat and were trying out many new things to see how independent mum can become, because Mum doesn’t want Elsa to lose her childhood. Thankfully, Elsa does attend a young carers’ project and is well supported by her school . They had been overwhelmed by the support of others who ensured they enjoyed the break, overcoming their own fears of how they would cope.
On the flight home I sat next to a couple who told me they had a son with autism who was now in residential care. Clearly they were still carers even though it was different type of care to when he lived at home. They told me they were really concerned about the government taking away the mobility allowance for those in residential care as it was the trips out that their son most loved and calmed him down.
The holiday made me realise how lucky I am and how nice people can be, caring and looking out for each other. I also realised that whilst 2010 had seen some wins for carers, promises of additional respite money etc., if we are to get a fair deal for carers and those they care for then 2011 will be another year of challenges.
Watching the Leaders’ Debate on Sky News last night, the needs of carers again featured strongly – as well as issues which impact on carers’ lives like pensions which obviously effect the financial well being of older carers.
And again respite breaks were discussed. We’re all aware that having a break from caring is one of the key needs expressed by Scotland’s unpaid carers. Indeed it is a key recommendation in Care 21.
As a carer myself, I appreciate the need to ‘get away’ from caring – that might mean having a couple of hours of ‘me time’ with a friend, being at the hairdressers – it doesn’t always mean having a week away – or indeed the person you care for having time away from the home environment.
A short break can be so many things – something which I think political parties have missed in the ongoing debate around carers as we move towards this exciting General Election.
There is still a real need – and gap – in terms of social services and other key professionals involving carers in planning services for those they care for. For carers, a Carers’ Assessment does not always lead to them getting the support they need, at the time they need it – and that includes having access to a short break. A break can range from simply being able to leave the house to do things which others take for granted, right through to a full holiday.
The needs of unpaid carers are featuring in this election – and leaders are listening. We welcome developments such as the commitment by the Liberal Democrats to give a week of respite to those who care for 50 hours or more per week.
But my plea to Nick Clegg, Gordon Brown, David Cameron – and Alex Salmond – is please listen harder. Work with The Princess Royal Trust for Carers, with the network of Carers’ Centres and organisations such as Shared Care Scotland to create and develop new and responsive opportunities to have a break from caring – with carers as equal partners in this process.
And above all, please keep asking questions of your local candidates – find out where they stand on these issues. The voice of carers needs to be loud and clear.
Carers – the nations’ unsung heroes. That was the message given out to the country last night by the three party leaders during their televised debate. The last five minutes focused on social care, and carers in particular, with the Lib Dems taking the opportunity to highlight their £500m commitment to provide breaks for carers. The party leaders should be congratulated for bringing carers into the national debate.
My mobile went berserk immediately as people recognised that such a high profile debate was great news for carers. However, media coverage and political debate will only be worth something if carers’ lives are improved as a result.
In my first ever blog I said how it was wrong to think that there was one single magic bullet that would solve all of the problems carers experience. Most carers desperately need a break; others need financial support; some would like to combine work with caring; many cry out for emotional support; whilst training carers in first aid and handling medications will make lives a lot easier for some.
We are changing as a society. Life expectancy is increasing, families are smaller and more geographically dispersed, and it’s likely that both parents now work. This means an increasing need to care for relatives with a decreasing ability to do so.
At the moment we do not enable people to care, we expect them to do so. Taking carers for granted translates into a lack of support which causes carers to suffer mental or physical breakdowns. But given the issues noted above, it is imperative that we get help to families and friends who want to care.
How we do that is bigger than just a five minute debate. It is not just the responsibility of politicians, or even carers to lead this. It is something that will affect all of us and our families. We have a duty to them to sort this now before it’s too late.
Carers – the nations’ unsung heroes? Yep, but let’s not kid ourselves that singing their praises will solve the huge issues we face. You can read a statement from The Princess Royal Trust for Carers Chief Executive, Carole Cochrane, here.
I wouldn’t say it’s like waking up on Christmas morning, but you do get a buzz at the start of National Carers Week. And some people are so eager to get it going that hundreds of carers and supporters completed a ten-mile walk along the River Thames to raise awareness and funds. They even had a tiny little dog as a mascot that raised hundreds of pounds.
My Carers Week kicked off with a carers information drop in service for MPs and peers held in Parliament yesterday. Barbara Keeley MP kindly organised the room for us and in the two hour period we got 10 MPs dropping in to ask our carers support workers about the issues that carers face, and also the problems they face trying to deliver support services for carers.
Some of the MPs were quite well versed in carers’ issues but it was good to see a couple of MPs who have never been involved before. There was one moment when we had an MP from each party there. Luckily no referee was needed and indeed two of the rival MPs wanted to have their picture taken together with our support workers. They must be friendlier sorts down Somerset way…
One of these MPs was a Lib Dem who I had quite an in-depth discussion with. He certainly seems a sincere and intelligent man and asked what the one thing that carers wanted was. I admit to being greedy by nature so said that carers would want at least two things – greater access to information and emotional support, and greater provision of respite breaks.
But it got me thinking afterwards that it was wrong to think that the multitude of problems that six million carers face can be solved by one sole policy change. Some carers would see increasing Carer’s Allowance as the main concern; others would see accessing respite as vital so that they can combine working and caring. Or should we be training health and social care professionals to more regularly identify carers and offer them support?
Carers come from all walks of life – young and old, rich and poor, urban and rural, straight and gay, black and white. Each has their own set of problems to face meaning there isn’t a single magical solution. It will take long-term dedication and drive to make the changes needed to improve carers’ lives and MPs will have to face up to that.