You may have seen Carers Trust’s recent response to a story from the Money and Mental Health Policy Institute’s finding that half of mental health carers know the PIN number of the person they care for.
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.
Find out more about mental health on Carers.org.
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.
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
Last week a group of young carers and young adult carers spoke in the Houses of Parliament. They talked about a subject that had never been covered in this type of discussion. The subject is probably a really familiar one for anyone who works with young carers but it is not really known by the general public – the mental health of young carers. Continue reading
I travel a lot. Not fun travel like “oh I just popped to Marrakech for the weekend” travel, but travel for work as in “yes I’m in Darlington today then I’ve got to get to Taunton tomorrow” – that sort of travel. The travel has a purpose (I don’t just have the weirdest idea of ‘fun’ ever), the purpose is carers, the purpose is inclusion, the purpose is change, the purpose is the Triangle of Care. Most weeks of the year I travel around talking to professionals in mental health services to support them to include carers in their services more; the Triangle of Care programme works to ensure carers are included, informed and supported in their own right whilst being able to have the skills and knowledge to support the person they care for better. On my travels I find the majority of people get it: they get that it makes sense to give carers more knowledge about how mental health services work; they get it that it makes sense to get them support in their own right; they get that whole family working makes sense for all involved. Continue reading
Winter has taken a while to reach us this year but the cold weather has definitely arrived! Winter can be a difficult time for all carers, particularly those who are elderly or care for an older or physically disabled person. Some older people and those they care for can find moving around very difficult and for some people any movement without help is impossible. It is this group of people who are at the highest risk in winter – not just from the cold itself, which can be devastating, but from isolation, loneliness and depression. Continue reading
Young adult carers are pretty fluent at talking about mental health. They refer to it in many ways when they talk about managing the different aspects of their life and supporting the person they care for. The language that they use is rich in emotions, concern and words such as stress, anxiety, depression, relief, isolation and connection. In discussions about campaigning and changing the support available for them and their families, my impression has been that the concept of mental health is a really important part of how they explain what needs to change. Continue reading
I talk about mental health very openly, I encourage others to do so too. I strongly believe that accessing help and being provided with a range of support for mental ill health has clear benefits for those struggling. No one should talk about getting help, support and medication for mental ill health as a negative, as a weakness. We’d never tell someone with cancer to pull their socks up and get over it.
The world is moving towards a better place for mental health (we’re not there yet) but I think we’re moving in the right direction. But, just like any journey we need the right vehicle, tools and supplies to get us to where we’re going safely. Continue reading
Note: The following blog post has been contributed by a guest blogger.
It’s sometimes hard to believe that people still refer to post-traumatic stress disorder (PTSD) as ‘shell shock’, and dismiss it as something and nothing.
For those living with the condition on a daily basis this attitude is understandably hurtful, and if you come across anyone who doubts that PTSD is a real thing, the infographic at the end of this post should give them an idea of how devastating it can be…
Do you know, for example, that 40 soldiers died serving in Afghanistan in 2012, but during the same year 50 soldiers and veterans committed suicide? Although not all of these suicides can necessarily be attributed to PTSD it is known to be one of the possible consequences of the condition if left untreated. Continue reading
Note: The following blog post has been contributed by Ruth Hannan, Policy and Development Manager at Carers Trust
To share or not to share (with apologies to William Shakespeare): that is the question; or at least that has been the question that Carers Trust has been asked to answer by Dame Fiona Caldicott as part of the Caldicott Committee review on information sharing.
If you ask any six year old across the land their responses will more than likely to be “yes, sharing is good”. We’re brought up being told by our parents to share; share our toys, share our sweets or share our seat; although most six year olds through gritted teeth would agree to share their sweets in principle we grow up understanding that it is the kind and right thing to do.
Charlotte Bronte said “Happiness quite unshared can scarcely be called happiness; it has no taste”; Bronte captures the value concept that we adhere to perfectly. Sharing is good for us and those around us; however when we begin to discuss information sharing the clarity becomes more blurred.
In 1997 the Chief Medical Officer for England commissioned a report on how patient information should be shared; this was due to concerns being expressed about the sharing of patient information and the rise of information technology which allowed for the easier dissemination of this information. Dame Fiona Caldicott chaired the committee whose findings were published in the Caldicott Report at the end of 1997. The report highlighted a number of key principles and made of a number of recommendations.
In February it was announced that there was to be a review of information sharing; specifically looking at striking a balance between patient confidentiality and information sharing.
Confidentiality and information sharing are thorny issues for many carers, especially mental health carers; this is one of the main reasons why Carers Trust took the lead on the Triangle of Care project to promote the benefits of carer inclusion in the sharing of information.
I (on behalf of Carers Trust) was therefore naturally delighted to submit written and oral evidence to the Caldicott Review Committee this week. We focussed on the need for clarity and simplification of the guidance on confidentiality and information sharing, ensuring that patients and service users are asked about information sharing so that their wishes are clear, clarity on the rights and needs of carers to be given non-confidential information and supported in their own right irrespective of the service user’s wishes and most crucially that staff are trained to be confident in the use of information sharing and confidentiality guidance.
The oral session was very positive and included a variety of carers, carers’ organisations; specialised service user groups i.e. Combat Stress and those affected by domestic abuse and members of the committee. There was a general sense that information sharing is a positive thing and aids recovery so long as this is done with a patient’s permission or if they are not able in their best interests.
We hope that the findings of the committee will lead to more informed and confident information sharing which will work in the best interests of both service users and carers.
The theme of Carers Week this year is “In sickness and in health.” You can look at that from all sorts of points of view. Obviously the quotation is taken from marriage vows, and for those people caring for a partner, but no less for those caring for parents, siblings, children, or friends, you’re there alongside each other through thick and thin. So the theme of Carers week might prompt you to reflect on the good times and the bad, the positive times and the difficult times. We don’t just discard someone when they’re ill, disabled or frail – we’re in it together.
But no-one’s saying that’s easy, and if you’re the person providing the care, it can feel unending, exhausting and frustrating some days. And things are getting worse- services closing with cutbacks, and less benefit money available. The research carried out for Carers Week found that 84% of people never expected to be a carer – and who does? Caring is something that generally comes unexpectedly – sometimes it happens overnight, or sometimes if develops slowly, depending on the situation of the person you care for.
Many carers feel sad for the different future there might have been, or sometimes the person they feel they’ve lost. Despite this, few carers walk away –not completely, at least although many sometimes wonder what would happen if they did. Carers Week is a chance to recognise the millions of carers who, through thick and thin, good times and bad, are there to care.
Thank you all, so much.
But it’s not just about the health of the person who has the care needs. Carers often put their own health on the back burner. Things need to be done, and perhaps there’s no-one else. So you get on with it, just do it, even though you’re exhausted, even though you’re feeling ill or really low. The problem is that if you’re exhausted, and you get ill, then who’s going to care for you, and the person you care for?
It’s hard to prioritise your own health. Many carers find it hard to take a break and even getting to doctor’s appointments. Having the mental energy to make an appointment, with all the messing about that entails is sometimes just another hassle that carers can do without.
With 10% of the population having a caring role, and the huge levels of poor health within the caring population, the Government needs to address this differently. We need to think of this as a public health issue. We know about lots of factors which make people unwell – lack of exercise, poor diet, smoking, drinking too much, as well as the social factors that are linked to this. The Government realises it needs to address those as they not only cost the NHS but they also on people’s ability to work, and so massive campaigns are funded. But where are they putting the resources in to support carers’ physical and mental health? The kind of money that would really make a difference?
I know there’s not a lot of money about. But saving money at the expense of carers’ health, whilst expecting them just to pick up the pieces left behind by the reduction in services and decimation of benefits, is no kind of saving. Carers already give up so much to help another person. They shouldn’t have to wreck their health too.
Carers Week http://carersweek.org/
There are campaign materials available for carers – template letters/emails to MPs, GP surgeries and for politicians to send to local authorities/CCGs/health trusts etc. Download campaign templates here