This blog is run by Carers Trust Policy Team. Together with our Network Partners, we provide support, information, advice and services for the millions of people caring at home for a family member or friend.
This week is Dementia Awareness Week and the theme this year is ‘Unite against dementia’. It is often said, ‘when a diagnosis of dementia is given, it is given to the whole family’ and therefore, uniting to support carers and families of a person with dementia must remain a top priority.
It is estimated that dementia costs the UK economy £26 billion and this figure is set to rise. Informal care provided, unpaid, by family and friends to people with dementia has been valued at £11.6 billion – 44% of this cost (Alzheimer’s Research UK). Carers may spend many hours looking after relatives and friends with dementia. A carer recently said to me, “There are three eight hour shifts in a day, you know, and we cover them all”. It’s important that carers have access to breaks on a regular basis, whether this is from a care agency providing care to the person with dementia while the carer takes some time for themselves; or engaging the person with dementia in activities and groups where the carer knows they will be safe and stimulated.
Dementia is a complex, unpredictable, long term condition and carers may find themselves caring for many years. Carers of people with dementia who are over retirement age – a time when they should be able to relax and try new things – can find themselves working harder than ever.
“I am 89 now, I am supposed to be retired. I want to care for my wife but this is the hardest job I have ever done”
When speaking to a carer recently after a stressful event, they explained that carers tend to expect the unexpected. While caring can build resilience in carers, it’s important for us to remember that they are not invincible. In a recent Carers Trust survey, over 80% of carers aged 60 or over said they had at least one health condition themselves, with 83% directly attributing this health condition to their caring role.
It is clear that carers are vital to our society and our economy. They give up their time, social life, work and financial security to look after others. In return, we must ensure they get a better deal when it comes to their own health.
Carers Trust have been campaigning for local authorities to add a question to the free NHS Health Check which will enable carers to be identified earlier in their caring journey and offer them appropriate support. If you are in contact with your local Health & Wellbeing Board, ask them to consider this as an option, or raise it with your local Healthwatch.
Carers are renowned for not putting themselves first, but they must; and we must unite behind them and do more to make this possible. It is not selfish for carers to look after themselves, it is vital. After all, who is going to care if the carer no longer can?
If you are a carer, why not contact your local carers’ service to see what support is available for you? You can find your local service here. You could look at our Carers Road Map, a guide which provides advice and information along your caring journey. You could also download our ‘Time to think about you’ prompt card and put it somewhere visible as a daily reminder to think about you.
Blog by Louise Marks, Dementia Policy and Development Officer, Carers Trust
Since joining Carers Trust in July, in conversation with Network Partners I’ve been struck by how fundamental the identification of unpaid carers is in terms of tackling some of the wider issues we know that carers face.
Over the past few months, I’ve been working with 16 Network Partners as part of the Raising the Voice of Carers project planning a campaign to get more carers identified and given the support they need at the time they need it.
What I’ve heard from Network Partners is that if we can better identify carers, then we can go some way to resolving some of the other challenges carers face – as well as relieving some of the pressures on the NHS and social care.
Launch of the Carers Toolkit campaign
That’s why we launched the Carers Toolkit campaign. We want more Clinical Commissioning Groups (CCGs) to work with local Network Partners to use the NHS England Carers Toolkit and Template Memorandum of Understanding (MoU) to better identify and support carers.
In discussion with Network Partners who are part of the Raising the Voice of Carers project, I was surprised how many of their local CCGs were not using the Toolkit including a MoU. The Toolkit has the potential to be a really useful way of identifying and supporting carers and was sent out in May 2016 by NHS England, and yet many CCGs were not using the resource.
This means that carers face a postcode lottery when it comes to identification and being supported. That isn’t fair and this campaign wants to stop this lottery.
Developing services and listening to the voice of carers
When developing services to help carers, it’s vital that commissioners understand two really important things:
that carers’ voices need to be at the heart of the services designed for carers
the immense local knowledge that Network Partners have and how to harness this when developing services.
Carers, as people with lived experience, I believe are uniquely placed to shape their local services. It’s only by working with carers and Network Partners that local areas will be able to successfully provide services based on carer needs.
The Raising the Voice of Carers project is about giving carers the tools and confidence to campaign on issues that matter to them. Carers Trust and Network Partners were keen to see carers take action on their own behalf and let local decision makers know about what their life as a carer is like.
That is why Carers Trust provided template letters for carers via Network Partners so they could get in touch with their local CCG Chair to tell them about their experience of being a carer and why it’s so important to be identified and supported.
We also provided template letters for Network Partners to send to their CCG Chair offering support in adopting and adapting the Template MoU. We wanted as many carers as possible to have co-signed the letters from carers services.
The more people that CCGs hear from the more likely they are to take action. Identifying and supporting carers is good for the carer, good for the person with care needs, and good for the wider health and social care system. It is part of the solution to the pressures the wider health and social care systems are under.
I hope that CCGs across the country listen to carers, Network Partners and members of the public they hear from to adopt and adapt the NHS England Toolkit to better identify and support carers.
If you’d like to know more about the campaign – please do get in touch by emailing email@example.com and let me know if you hear from your CCG.
Blog by Ramzi Suleiman, Policy and Campaigns Officer, Carers Trust
Most of us dream of a retirement when we can put our feet up, live stress free and take up that activity or hobby we had never before had time to do.
For an ever increasing number of people, however, this dream falls flat when someone close to them has a long term illness, disability or is struggling with drugs and/or alcohol use.
Today Carers Trust launched a new report – Retirement on hold (PDF, 406KB) – supporting older carers. The report sets out the issues older carers told us they faced, and makes recommendations to ensure older carers get the vital support they need now and in the future.
Carers Trust are calling on local and central government to ensure the growing numbers of older carers are well supported and are considered a priority when planning services for the future; after all they have given up their well-earned retirement and are increasingly at the sharp end of the social care funding gap.
The growing population of older carers
It is widely recognised that we have an ageing population, people are living longer and often with multiple long term health conditions.
Alongside the growing numbers of older people with poor health, we have a growing population of older carers who are looking after them. The number of carers aged 85 and over grew by 128% in the last decade (Carers UK and Age UK, 2015).
As we get older we feel increasingly tired, and may develop our own age-related health problems.
Under normal circumstances we would slow down, take a rest in the afternoon, sleep late and generally take it easy. This is not possible for the growing numbers of older carers who say they are exhausted.
“When I was at work and was sick I could take time off and rest. That’s not possible now, I have to haul myself out of bed to take care of my mum.”
“I have worked all my life, but this is the hardest job I have done. I never dreamt I would be doing these things for my wife. I want to do it but it I must admit it was a steep learning curve, I am 90 now and have had to learn new skills to care.”
Carers Trust has run two successful actions as part of the campaign. The first action saw carers and supporters contact over 300 local councillors to ask for improved coordination of care services, to prevent them having to attend multiple appointments and make multiple phone calls.
In the second action, nearly 250 carers and supporters contacted their local Clinical Commissioning Group and Health and Wellbeing Board to ask for a better deal when it comes to carers’ health.
We must prioritise carers’ health
It is well recognised that caring is a risk factor when it comes to our own health. We must prioritise carers’ health, make it easier for them to take time out to attend appointments and keep up activities.
After all, if a carer is forced to stop caring because they are unwell, the person they care for is likely to need crisis or unplanned care, costing the health and social care systems time and money that could have been better used for prevention.
Blog by Louise Marks, Dementia Policy and Development Officer, Carers Trust
Nic from the Money and Mental Health Policy Institute talks more about the subject in this excellent guest blog.
What do you do when, to care for someone you love, you have to break the rules? When you’re trying to help, but the computer says no, or the system won’t allow it? Do you agree and step away, or do you bend the rules and help anyway, hoping it’s for the greater good?
When it comes to supporting someone to manage their money, our research has found that many carers find financial systems so inflexible and unhelpful that they’re bending the rules just to help keep the person they care for afloat.
Banks often want to speak to the account holder directly, which is difficult when anxiety stops them making phone calls. Accounts are set up with a single user, one set of permissions, one PIN number, and asking the bank if you can pay the bills on someone else’s behalf is like speaking a foreign language.
Sharing PIN numbers, online banking passwords and contactless cards are just some of the most common workarounds that carers have told us they use. Over half of carers (52%) for someone with a mental health problem know someone else’s PIN number, while almost a quarter (23%) know someone else’s online banking passwords, significantly higher than the wider population.
For many people with mental health problems, as well as other conditions like dementia, the support of a carer can be the difference between being able to manage and slipping into financial difficulty as a result of impulsive spending or lack of financial management. Having access to the bank account of the person they care for, to keep an eye on spending and bills, can be vital for carers of people with mental health problems.
The best worst option
“It does not feel comfortable for me to be pretending that I’m my father, which is effectively what I was doing… But it was the best worst option.”
Though using these workarounds allows them to help, many carers have told us they find it uncomfortable having to use them. In using the PIN numbers and online banking passwords of the person they care for, they are, in effect, pretending to be them and leaving no record of what transactions, or withdrawals they have made.
This can leave both carers and the person they care for in a difficult position down the line, it muddies the waters and creates the potential for both financial abuse and accusations of financial mismanagement.
What we are calling for
Caring for someone shouldn’t involve having to take on extra financial or legal risk. This is why we’re calling on banks, building societies and utilities companies to recognise the importance of the support carers provide and create systems that allow them to do so. We’re calling on organisations to:
Develop a strategic approach to carer and family access to information so there are clear rules across the board about what carers can expect when contacting a bank or building society.
Develop simple, flexible and accessible tools for third party access, support and control of customer accounts like read-only access to accounts, notifications of unusual behaviour like large transactions, or delegation so carers can take make some kinds of financial decisions for the person they care for in a transparent way.
Improve the Power of Attorney system so it appeals to people with ongoing, fluctuating mental health problems, not just people with deteriorating health conditions.
We want to hear from you
If you care for someone with a mental health problem we want to hear about your experiences, what issues you’ve had or difficulties you’ve faced, and most importantly what you think would help.
Money and Mental Health’s Research Community is at the heart of our work. We need to hear from people with mental health problems and their carers to make sure that we are working towards solutions that make living with and supporting someone with a mental health problem a much better process for all involved.
Guest blog by Nic Murray from the Money and Mental Health Policy Institute.
I have been the Mental Health Policy Manager for England at Carers Trust for six years and three months (nearly). In my first month of the job, the Triangle of Care landed on my desk and as they say the rest was history. Now, all this time later as I prepare to leave Carers Trust I ponder: where are we now? What difference has it made?
If you still haven’t heard of the Triangle of Care (where have you been) it’s a resource that was developed by Alan Worthington and a group of carers based on their experiences of mental health inpatient services. It set out six key standards which, if in place, they would feel included and supported.
What is the Triangle of Care? - YouTube
This short document originally written to improve carers’ experience of inpatient mental health services is now being implemented across all mental health services, learning disabilities, community health, substance misuse and older people’s services and is changing the culture of health as we know it.
I’m sure when it was written they never thought it would have been adapted for Scotland, Jersey and Australia and have reached as far as Japan and New Zealand.
Triangle of Care – beyond a project
When I first began working on the Triangle of Care, I thought (naively I realise now): “well this will take a couple of years but that’s all”. Six years on and although we have made huge strides I realise that I’m still only in the first half of the marathon race.
So what has this six years taught me? Well, firstly that that Triangle of Care goes beyond a project and is actually a programme for cultural change; health services are not carer inclusive, carers just aren’t part of core business (no matter how many Carers Strategies they write); Triangle of Care is changing that.
There is a will from many staff to include and support carers but this needs nurturing, support, training and empowering; this needs ongoing support from senior managers to see that including carers isn’t a quick fix but an ongoing process.
That there is huge amounts of good work going on out there and if one ward or community team can do it so can all of them! That you can get a lot done on not much money as long as you’re tenacious and determined, but it does need resourcing and it does need support.
We (Carers Trust) have achieved huge amounts on a tiny budget in six years, I often wonder what we could have done with the budget for Dementia Friends…….(sorry drifted off into a reverie there).
Adapting the Triangle of Care for multiple audiences
Now here we are six years on, we’ve adapted the Triangle of Care for dementia, for young carers and in the New Year will be adapting it especially for Children and Adolescent Mental Health services.
We’ve developed resources, guides, toolkits and given innumerable presentations as well as travelled on more trains over the entire country than I can count.
The next steps are exciting though, a new person and a fresh set of eyes will keep pushing Triangle of Care forward. I hope carers, service users and professionals will keep pushing for Triangle of Care in their services too. We’ve got 31 Trusts in England signed up (that’s more than half) but there are still some not signed up, not even involved.
You can check if yours is on our Carers Trust Professionals website, if they are get involved and support the implementation. If they’re not involved start asking why, write to the CEO and the Chair, and spread the word about Triangle of Care to other carers so that at every meeting and interaction someone mentions it.
Six years and 31 trusts have shown me there really is no excuse not to sign up to Triangle of Care; I’m proud of the legacy I leave behind and look forward to next part of the journey. The decision to leave was an incredibly tough one, but I know that Carers Trust will continue to drive Triangle of Care forward and how the NHS works with carers will change irrevocably.
You never know if you’ve done a good job or made a difference but this comment from the wonderful Veronica Kamerling shows the power of Triangle of Care:
“What you have done to put together and promote the “Triangle of Care” is so fantastic and incredibly inspirational. I hear it being talked about everywhere I go – it is a real success story and such a wonderful tool for carers and has got everyone thinking about carers!”
Blog by Ruth Hannan, Mental Health Policy Manager for England at Carers Trust
As children we are taught to put others before ourselves and we carry this notion into adulthood. I would like to challenge this notion, especially where carers are concerned.
Carers have a constant worry about what would happen to the person they care for, if something happened to them; yet for too many their own health concerns are put on hold, ignored or just not met.
A new Carers Trust survey of older carers reveals more than 80% of carers had at least one health condition, with 66% directly attributing it to their caring role. Astonishingly, over 50% reported 3 or more health conditions.
The survey backs up what we already know about carers, that they put their own health on hold. Over half, 57% of carers, said they had postponed or cancelled their own appointment or treatment due to their caring role.
We can’t ignore carers’ health issues
Carers are all too often going without enough sleep, are unable to take time to exercise and giving up activities and hobbies they enjoyed, contributing further to their poor health.
We cannot afford to ignore the health issues faced by our growing population of carers. More people than ever are caring, and caring for longer and later in life. Carers are vital in supporting the stretched health and social care system. It is therefore imperative their own health is prioritised.
Putting our self first when it comes to health is not selfish and we should not feel guilty, it is vital especially for those people with a caring role.
Carers Trust is calling for local authorities to use their power and add a question to the free NHS Health Check, asking if people have a caring role.
This will help identify carers early, ensuring they get the advice and support they need to look after their health long term.
The Young Carers in School (YCiS) programme has had a big impact on Bartholomew students who are young carers. The average attendance for our young carers (YC) during 2015-16 was 94.2%, an increase on each of the previous two years. YC attainment is also impressive, with YC students achieving 87.5% A*-C including English and maths at GCSE last year.
But of course, the YCiS programme is not just about supporting academic progress. We have noticed a significant improvement in students’ emotional well-being, confidence and self-esteem. They have access to funding to support extracurricular activities, as well as opportunities to try new activities. Our YCs also tell us how much they value having the space and time to talk to someone, and to meet other young carers from across the UK. Parents also feel listened to and supported. But, perhaps most importantly, our students feel proud that they are a young carer.
From a teacher’s perspective, it is really important to understand what is going on with each of our young carers, including any and all factors which may affect their progress. We are then best placed to put in place the most appropriate support for their individual needs, be it adjusting homework requirements, offering additional support to help them catch up if they have missed time out of school, ensuring they get the same opportunities as their peers both inside and outside the classroom, and signposting to other supports and opportunities – such as days out, YC youth club or CHICKs respite.
We see so many success stories among our young carer students, and one that is typical is the young carer who was struggling emotionally both at home and in school. He has been a carer for many years, but it was only after he had received support in school and had started to attend the local YC youth club that he had the confidence to leave his mum and attend a respite residential break in the summer where he was able to experience activities such as horse riding for the first time. Mum also feels supported and listened to, especially as we are able to assist in looking at appropriate support avenues and referrals. This young man’s attendance has also improved since he became involved in the YCiS programme.
Another one of our students was identified 5 years ago as a young carer. Initially supported regularly 1:1 and via Spurgeons, she has now been able to access the children’s support fund to help with funding a new laptop to help with her studies. She has grown hugely in confidence and now feels able to support other younger students who are young carers. Her excellent GCSE results were also an indication of the positive impact of the YCiS programme.
Bartholomew School have also been supported by Oxfordshire County Council through the Oxfordshire Young Carer School Standards.
I’m three months into the new job and this is my first Carer Week. It’s really impressive to see how much activity is taking place across the UK. Local carers services have been brewing up a whole range of events in local libraries, town halls, shopping centres, social media and much more besides. Carers Trust have been on TV and radio, raising awareness of carers and the work of our local carers services.
On Tuesday, Carers Trust, with carers and other charities, chatted to lots of MPs at a Westminster parliamentary event. Also in Westminster, Parliament is having its first full day carers debate for several years this Thursday.
It’s important we continue to raise awareness because we know that many carers go unsupported. Carers Trust Network Partners see about half million of the UKs carers. Which leaves nearly 5m who don’t access these valuable services. This might well be that many carers decide these services are not for them. Much more likely is that they are simply not aware that they exist. Our ambition is to see our Network Partners reach many more of these carers, to let them know about the support that’s available.
I sat in on a drop in session in my local carers centre last week.
Mona (not her real name) is a single mother of 3 children, one of whom has been severely disabled all her life. Having reached the age of 18 her disabled daughter is now entitled to employment support allowance. ESA for short. The ESA form is a formidable 52-page booklet, seeking all sorts of information about the claimant. Given that Mona and her daughter have been in receipt of statutory services for the last 18 years, it’s almost certain that most of the information they’re asking for is known to statutory authorities already. Sitting in others systems probably. Mona’s English was good and she said she could probably fill out the report herself, were it not for the fact that she’s completely exhausted. The form’s already a month overdue so they’ve lost out on some benefits already. The staff in the centre were incredibly helpful. They phoned the ESA folk straight away to check on the deadline and are going to sit down with Mona to help her complete the form and send it off. They’re also going to try to get Mona a break. Possibly with a grant from Carers Trust. I hope she’s successful. As she was leaving I told Mona about the weekly carers film club in the Carers Centre, which got her all excited. Let’s hope she checks that out too.
Despite all of the help that’s on offer to carers, from Carers Trust Network Partners and many others, Monas case, and the evidence in this year’s State of Caring report, reminds us that life remains really tough for many of the UK’s carers.
So in this week of celebrating all that carers do, let’s not forget the inconvenient truth, that many UK carers are not having a good time.
There was no sign that Mona had received her Care Act Assessment under the new legislation. Carers Trust has been looking into how the new Care Act is working for Carers one year on. Look out for the report in early July. We hope it will give government, both national and local, important evidence about what needs improving, and food for thought as the new national carers strategy is being developed.
In the meantime, if you’re supporting carers or are a carer yourself, see if you can take some time to take part in Carers Week this week. There’s a lot of fun stuff happening all over the UK, quite possibly near you or if not on-line.
Remember Carers Trust is here to help. You can find your local carers service by calling 08448004361 or on http://www.Carers.org
Joe Gannon is Director of Policy and Research at Carers Trust.
I’ve had this feeling lately that campaigning is really easy but then I’m getting a lot of help. I have had young adult carers creating campaigns and then I do the easy bit of getting the message out there to all the lovely people in contact with Carers Trust.
A young adult carer got in contact about her student group’s campaign for UCAS to change their application form. That way carers can identify themselves using a tick box. Carers Trust is getting the message out there and collecting signatures for the group’s petition.
So why would a tick box for carers make a difference?
A question on the application form asking if you were a carer and a tick box to answer would make it so much easier for young adult carers to tell universities that they are a carer. It sends a message that carers are a group that universities want to hear from and that they have something to offer those students who are carers. At the moment it makes it seem that universities do not want to be told. In fact many universities want to know because they can offer extra support.
In summary the reason this needs to happen is so that many more student carers will be identified and will get support. It is a change that both carers and universities want. UCAS can make a small change that would make a big difference for the 375,000 young adult carers in the UK and student carers in general.
So back to my point about campaigning being an even better thing to do when you have the help of other people. Supporting this campaign from student carers has meant I was inspired by their great ideas, enthusiasm and the courage to put their name to something that matters.
It also has another meaning too. Carers Trust reaches out to carers through a network of brilliant and valued local services. We have links with universities. We have been speaking with student unions and NUS who are championing student carers. Together we can amplify the voices of the young adult carers and student carers that started this campaign. Isn’t campaigning great!
This week is dying matters week, the week will be used to highlight the importance of having conversations with our close family members and friends about what we would like when we are at the end of our life, and how we would like to be remembered. We are encouraged to get ‘our house’ in order and to fulfil as much of our bucket list as we can.
For carers dying is something that is often on their mind. Not as many may assume about the death of the sometimes very sick person they are caring for, although yes of cause this can be real worry for some; overwhelmingly carers worry about their own mortality. This is not because they want to fulfil their bucket list of a bungee jump or running a marathon they do the equivalent of this every day in their caring role. It’s because their overwhelming concern is about the person they care for.
‘What will happen to the person I care for if something happens to me’
‘I just want to live long enough to care for them until they die’
‘Maybe it would be better if went together I wouldn’t have the worry then about leaving them vulnerable in this difficult world’
‘I would like to be able to keep them at home for as long as possible’
Those of us that work with or have relatives who are carers hear these statements regularly. I wanted to take the opportunity this week to encourage carers to look after themselves and for commissioners, service managers and policy makers to make it easier for carers to attend vital appointments and participate in social activities that keep them well. Carers would never dream of not taking or missing an appointment made for the person they care for, yet too often they miss, or just don’t get round to making their own.
It is not selfish to put ourselves before the person we care for, in fact it is vital. In order to care for someone we need to care for ourselves first so we are fit and well to care for as long as we are able or wish to; remember the line
‘What will happen to them if something happens to me?’
Well the better care we take of ourselves the less likely it is that something will happen to us.
Dying well does matter, but for carers especially living well matters even more.
Louise Marks is Dementia Policy and Development Officer at Carers Trust
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