Every autumn, staff working on the frontline of the NHS form an orderly queue, roll up their sleeves and have their annual flu jab. Such enthusiasm to be vaccinated reflects a general consensus that flu can be very nasty and, in some cases, fatal. In fact, who could disagree with the rationale – that if healthcare staff don’t get vaccinated, they could pass the virus on to their patients, some of whom will be particularly susceptible to developing complications. And of course, who will look after the patients if healthcare staff go down with the flu and are too sick to care for them?
For me the day began with a walk past eagles with their wings outstretched, catching some rays in the early morning sun. I was heading to a room in London Zoo. In a few hours 40 young carers and young adult carers would turn up ready for a day of discussion, questions and campaigning. The NHS was bringing together important decision-makers such as Simon Stevens (Chief Executive of NHS England), Neil Hunt (Chief Executive of the Royal College of GPs), Wendy Nicholson (Professional Officer School & Community Nursing at Department of Health) and Xane Panayiotou (Department for Education). These decision-makers are involved in areas such as school nurses, GPs and new legislation to give stronger rights to young carers. Others oversaw big chunks of the NHS, such as services for people with long-term conditions and improving patient experience. They were coming to the event to listen to young carers and young adult carers in order to act and improve the NHS for them. Continue reading
As part of the test, we asked them to look at the slides produced by The Nuffield Trust on the old and new NHS structures and what has changed.
The slides show the main changes to management, accountability and funding structures resulting from the Health and Social Care Act 2012.
In our latest blog, one of the network Chief Executives reflect on how the different parts of the new system – Clinical Commissioning Groups (CCGs), Health and Wellbeing Boards, Public Health and HealthWatch – are working together in her area.
She says that things are still confusing and that there are still lots of challenges to address as the reorganisation of the NHS continues.
I have studied the slides and whilst they are not difficult to understand, they are unnecessarily complicated and it’s interesting that the different bodies appear to work in isolation of each other. There doesn’t seem to be anything between each body, leaving plenty of opportunity for conflicting and duplicated work. Also I’m not sure whether the local structures are clear.
Some developments but more engagement needed
The Health and Wellbeing boards have identified some priorities, and they have met with some of the partnership boards (including voluntary organisations) to detail how they want to work. They have identified carers’ needs as one of their priorities – that said, they are not engaging with carers’ centres and at the moment details of membership, or approaching members of the boards to raise issues, is shrouded in secrecy. This is my experience — there may be others who think differently but I have yet to find them!
In my area there is a partnership board, which is a partnership of statutory and voluntary sector organisations, who meet every couple of months to discuss the headline issues and the Director of Public Health usually attends these.
The last two meetings have been cancelled for one reason or another, and it is at times unclear what the purpose of the meetings are as each participant appears to have their own agenda. This is particularly noticeable just now as contracts are changing and the council are opening up services for tender.
Are different parts of the structure working together?
Whether or not the Health and Wellbeing Boards are getting involved with new CCG arrangements is another unknown. This includes whether they are any good at filtering out what they are involved with and any anticipated outcomes.
There are plans for the CCG’s in my area to work with the local authority. However, how they work is not made clear to either stakeholders or wider partners in general.
There is almost an air of secrecy around who works with whom and to be honest I do not think this is entirely the fault of the CCGs. Our local authority have not been proactive in informing the communities that they serve how they plan to work with the CCG’s and what their joint priorities are, or indeed what conflicting priorities exist.
I’m guessing the Public Health are engaged, but again: what their input is, what any anticipated outcomes are, how they are working with the wider community and with the CCG’s in particular, has not been communicated.
It feels at times as though these bodies (I can’t really call them partners at the moment, because there is very little real partnership taking place) are shrouded in the Harry Potter cloak of invisibility. It is really confusing!
Being there for someone in the last few days of their life is just about the toughest thing you can do. At the same time as you are focused completely on them, you are struggling with your own terrible feelings of distress and grief. And then, when it’s finally over, you discover it’s not over at all. As a carer or family member you have to find a way to carry on when your world has been blown apart. I know because I’ve been there when my mum died 13 years ago.
There is so much that the NHS and others can do to make this, which will always be a terrible time, as least awful as possible but too often families and carers are left to struggle. If you can call me lucky, (and to be fair I don’t feel all that lucky), the doctors and nurses that supported me and my family were fantastic and made something so awful much more bearable.
Last year, an independent review of palliative care was carried out, looking at the way people with life-limiting or life threatening conditions, and their families and carers are supported. Our system is a mish-mash. Some services are funded by the NHS, some by charities, and some paid for by individuals and families themselves. Many people don’t get the service that would be best for them if they had the opportunity to choose from all the options.
If a local hospice is the place that you and your family feel is right, that’s where you should be able to spend that precious time. If you think hospital or a care home is the best place, again that’s what should happen. If being at home is right for you and your family, then that should be made to work with the right kind of help. There is a push to ensure more people die at home than in hospital – generally what people want – but often not enough support for families. Without the right kind of support, carers and families often can’t cope. The person ends up being readmitted to hospital as an emergency, and sometimes never comes home again. Not what anyone wanted.
If you and your family do decide being at home is the right place, then effective support needs to be available 24-7. How many times are we told help will be on hand only to discover that the office is only staffed 9 to 5? If it’s 2am, how are you supposed to manage until the morning? Crises don’t just happen in office hours.
Yesterday, the Government and Marie Cure Cancer Care announced funding for pilot sites to explore what better support for people at the end of life would look like and how this can be made to work. Although it’s easier not to think about it, this is one thing we’re all going to have to confront eventually. We need to make sure that when we’re facing this one great final leveller, there is the equity of support to make it no worse than it has to be – for the person themselves, of course, but also for their families and carers.
We are supporters of the Dying Matters Coalition. More information is here
The Government has made an immediate response to our ‘NHS Not Making the Break for Carers’ report by prioritising carers in the NHS Operating Framework for 2012/13. The Operating Framework is the set of requests given to the NHS by the Department of Health every year, guiding their priorities.
Following our report, the Government has said that carers is one of only three areas that have been designated as requiring “particular attention”. Think of all the illnesses, diseases, long-term conditions and medical issues the NHS is concerned with, and then consider what it means that carers are up there as the most important priority.
Of course, the reason that the NHS needs to pay “particular attention” is because they have not been doing enough to support carers, despite additional money and Government requests to do so. This Operating Framework is a sign that Health Ministers Paul Burstow and Andrew Lansley are losing their patience having been quite clear what they expected from the NHS in terms of supporting carers.
What they didn’t expect was that most Primary Care Trusts (PCTs – local NHS bodies) would not publish plans and budgets to support carers despite being asked to; and that some would continue not to invest a single pound in services to support carers, despite receiving additional money for this.
So for 2012/13, PCTs need to agree plans and budgets with local authorities and local carers’ charities. These plans should identify how much of the total is being spent on breaks and indicate the number of breaks that should be available from that funding. Importantly, PCTs have to publish these details on their websites by 30th September 2012 at the latest.
But we can’t wait until then to act. Carers and carers’ charities need to be contacting their local PCT now to find out how they will be improving on what they were doing this year. PCTs by ranking in terms of spending on services for carers and ask the non-Executive Directors of your PCT what they will do to improve that.
The NHS has a duty to those people who have often sacrificed so much to care for people, and they also have a duty of care to their patients who are otherwise being cared for by their friends and family. Our message should echo that of the Government’s; the NHS can no longer avoid their duty to carers.
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.