A few years ago, Karen gave up work to care for her husband full time. She wanted to work part-time and care but her
employer was not willing to consider reduced hours. Plus, health and social services calculated that it would cost £160k p/a to provide a care package to meet all of his needs. The cheaper option was to leave the care to her and provide £5k worth of support.
Karen’s husband has a degenerative condition which does not directly cause early death. She pointed out that he could live for another 28 years but that there would be no chance she could carry on that long. She feels that she is being run into the ground and exists to provide care.
For about 90 minutes today, Karen shared her story with Rory Stewart MP, Peter Aldous MP, Laura Sandys MP, Cathy Jamieson MP, Andrew Bridgen MP, Stephen Mosley MP, Jonathan Lord MP and Tracey Couch MP.
James (aged 19) and Samuel (aged 15) were also there speaking to these MPs. Both care for their mothers and have done so for many years. Their message was simple:
- GPs need to think about who is looking after their patient at home
- schools have to realise that pupils can be young carers which affects their school work
- local young carers’ projects can provide vital support
These were young men who were speaking matter of factly about what they do, the impact on their own lives and what more should be done. It always strikes me how mature young carers can be when discussing their situation. Afterwards, we walked around London to see Buckingham Palace and Trafalgar Square, and they talked about their interests and futures. This should be a time of choices for both.
Karen didn’t seem to have many choices; the map for her life had already been drawn. Her story illustrates why many carers feel taken advantage of and taken for granted.
The galling thing is that Karen could be considered a lucky carer as she might get a personal budget of £500 this year as a result of the Government’s £400m injection into the NHS for carers. Very few carers get a personal budget (fewer than 50,000 in 08/09) and if they do it is usually for approximately £250. So Karen could nearly consider herself a model of how the extra money is providing extra support. But as she pointed out, her £500 will still only provide one hour off every fortnight.
This is not the change that carers need. This can only just be the start or we will leave James and Samuel with no choices, and no chance.
PS: Carers need continued support. Don’t forget to tune-in to BBC Lifeline’s appeal for carers on BBC One on June 19th at 4:45 pm (if you are in Scotland, Wales, Northern Ireland) and 5:15 (if in Scotland). Please do spread the word.
Note: The following blog post has been contributed by Michele Lambert, Web Manager at The Princess Royal Trust for Carers
Working day in and out on the internet, I can veer from an incessant curiousity and excitement about new technology and its applications to an occassional urge to throw my computer out of the window and make a break for freedom, to a place where the world wide web can’t reach me. It can sometimes feel like communication overload; there are so many options to contact each other wherever we are, from Twitter to Facebook to now old-fashioned email.
Reading an old letter over the weekend, it seemed unbelievably quaint that I used to keep in contact with friends and family in that way. Now you can be at the other side of the world and still in a second help your friend decide what to cook for lunch. It’s so immediate that it has totally changed the way we interact.
With the internet a new world really did open up and brought its own particular challenges. Privacy intrusion and safety issues frequently come up in relation to Google and social networking sites. Last month there were even reports of ‘Facebook depression’ among young people; the site could feel like a popularity contest, heightening feelings of loneliness.
For most though, the internet reinforces social connections – and for those who are particularly isolated, connecting with others via social media can make a huge positive difference to their lives.
A survey we ran on our website earlier this year showed that nearly 9 in 10 carers (87%) find it difficult to leave their home due to their caring role. Over half (53%) felt alone and isolated and 46% had no free time to visit support services.
So this month we asked carers blogging on our site to write about the internet and its impact on their lives – and it makes for interesting reading.
From a young carer who struggles to imagine a world without it to the unexpected uses technology is put to. One carer writes: “When.. my daughter is lonely as she is at times, she goes upstairs and we chat on messenger. It is a great laugh and I pretend I am different person each time. This helps her type, learn to communicate and have a joke.”
Another uses Google maps to “walk” around the streets where she grew up. Often the opportunities it offered were not to do with caring, but helped in coping with some of the limitations that a caring role brings.
It’s clear digital innovations have a huge potential to empower groups such as carers, particularly those at the sharper end of caring who have difficulty accessing physical services. However 20% of the UK is not online – hence the government’s current digital inclusion drive. It’s about improving access to technology for groups who may be disadvantaged or marginalised due to age, disability, or geography. This might be due to lack of physical access or lack of resources or the skills to benefit from it.
Of course new online services need to be designed with those (living and working) on the front line and cannot be a replacement for face to face services – there will always be more complex cirumstance than online can cope with and there will always be a need to ultimately have someone there to talk to.
Contrary to my breaking free impulse through, it’s obvious that the internet really does represent freedom for a vast number of people who otherwise wouldn’t have this – whether that is empowering them to organise protests and demonstrations, or the opportunity to access info, friendship and support they would otherwise go without.
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.
Note: The following post has been contributed by Carole Cochrane, the Chief Executive of The Princess Royal Trust for Carers
Wednesday 28th July was another hot day in London (well it was for northern based lass). And like many of my London working days it was crammed with various meetings.
The day started with a breakfast review meeting with The Trust’s Director of Fundraising before we both went off to meet with someone who had recently made a significant donation to The Trust (always good to thank in person).
As I say it was a hot day and by the afternoon I was already feeling pretty tired and dishevelled and I had to change into a new set of clothes. Feeling a bit more like a Chief Executive, I headed off to my last appointment of the day which was to launch the Triangle of Care report at the House of Lords.
Tony Baldry MP, Co-Chair of the APPG and a real supporter of carers, was really the person launching the report. I was asked to speak and although I had some points prepared, after talking to carers there I felt that I wanted to speak as a sister of someone with a ‘severe and enduring’ mental health issue.
I talk to so many carers of someone with a mental health issue, who are often worn down with caring and fighting to get good services and I felt that I needed to speak for my parents, my sister and all those other carers who don’t get the chance to do so.
I know only too well the impact my sister’s illness has had on our family unit and in particular on the health of my elderly parents, who are still the ones that pick up the pieces when my sister is ill and again when she is discharged back into the community, sorting out a flat, furnishing etc.
The Triangle of Care report attempts to bring together the carer; the cared for and the professional and get them all working as partners. So many carers tell me they feel invisible when care packages are being put together but are all too often the ones that have to implement and manage the care.
The essence of the document is to clearly identify the six key elements
required to achieve better collaboration and partnership with carers, with good practice examples and resources.
1. Carers and the essential role they play are identified at first contact or as soon as possible thereafter.
2. Staff are ‘carer aware’ and trained in carer engagement strategies.
3. Policy and practice protocols re confidentiality and sharing information are in place.
4. Defined post(s) responsible for carers are in place.
5. A carer introduction to the service and staff is available, with a relevant range of information across the acute care pathway.
6. A range of carer support services is available.
I had a really enjoyable time at the event and spoke to some wonderful carers who I know are hoping that the Triangle of Care becomes everyday practice so their loved ones get the services they so richly deserve.
P.S: had a recent text from my sister who tells me she is really happy – it has been over 25 years since we have heard those words – so I know things are getting better for her and my parents and that is what I am sure those parents that spoke to me on the night long to hear.
Well, we finally reached an important landmark on Monday 26th July, with the publication of “Caring Together”, the new Carers Strategy for Scotland, and “Getting it Right for Young Carers” the UK’s first separate Young Carers’ Strategy.
As we move into one of the most difficult financial periods for decades the Scottish Government has allocated approximately £5.5 million to the Carers and Young Carers’ Strategies – and all of this will go to the voluntary sector. £5 million will be focused on developing and expanding innovative respite and short break services for unpaid carers and young carers.
The Princess Royal Trust for Carers has been directly involved in helping to shape the content and actions of both documents.
Key highlights include:
- Creating a Carers Rights Charter – the Government is also consulting on legislating for carers to have access to Direct Payments in their own right.
- Investing in carers training, building on an existing £281,000 investment during this financial year.
- Improving the identification of carers by health and social care services
- Making carers’ own health and wellbeing a priority
- Promoting carer-friendly employment practices and encouraging income maximisation
- In a Scottish and UK first, it includes a separate strategy on young carers – “Getting it Right for Young Carers”. This includes a range of actions which will help professionals from a range of agencies to better identify and support young carers to achieve their full potential.
- An investment of £150,000 to The Trust to develop a 4th Scottish Young Carers’ Festival in 2011, which will help review progress in implementing “Getting it Right for Young Carers”.
Carers and young carers in Scotland will directly benefit from the welcome additional investment in a range of ways, demonstrating the Minister for Public Health’s commitment to carer and young carers’ issues in Scotland.
As a carer going through our own crisis situation at home, I know how hard we will all need to work to ensure that both documents are fully implemented. Much still needs to be done, and the strategies are a brilliant starting point.
We retain some concerns about what happens now that the strategies have been published:
- The need to ensure that sustainable funding is in place for Carers’ Centres and young carers’ projects. They continue to experience a substantial increase in demand for support in their local areas, but in many cases, with no increase in funding to deal with this.
- The Concordat between local and national government which means that there is no compulsion on local authorities to implement the strategy documents.
- As we move toward unprecedented public sector cuts, the strategies make a clear case for investing in support for Scotland’s 657,000 carers and 100,000 young carers. However, the fact is that carers and young carers are still an easy target when cuts are being sought – recent developments at Westminster in relation to benefits and feedback from local areas in Scotland demonstrate this.
It is vital that an implementation plan is put in place as quickly as possible with all key players ‘signed up’ to take things forward. The Trust has a key role to play in this.
Carers’ Centres and carers can also use the documents at local level to hold councils, health boards, Community Health Partnerships and others accountable. How are they implementing the documents; what actions are they taking locally to improve carer support; what are local authorities doing with other partners to ensure that young carers have the chance to be children and young people first?
So, we are on the next stage of the journey – and we are under no illusion about the challenges which lie ahead in implementing both the vision and actions within each document. We would urge carers to speak to their local MSPs to ensure they are supporting and pressing for the strategies to be implemented. Meet with your local Councillors to ask how local authorities will take the strategies forward.
We will also be working with Carers’ Centres to ensure that decision makers are fully aware of the brilliant work that they do, how this benefits carers and what carers and young carers need to enjoy a quality life in their own right.
The Independent Budget Review report was published yesterday (29th July). Lead by Crawford Beveridge, it outlines that no part of public sector spending should be exempt from cuts. John Swinney has invited all political parties to look at the findings and the options for Scotland’s budget in future. Members of the public have been asked to contribute ideas about public spending. Please take some time to submit ideas and highlight the importance of maintaining funding for carer support.
See below for more information:
A guest blogger! I’m Drew, The Trust’s lead on all things mental health related. I’m stepping in for Gordon this week because, well, we like to keep things fresh!
Gordon would like to have the excuse of being on an all-expenses paid trip to the Bahamas, but alas for him, he is doing his job as normal. I’m also here to give a flavour of some other work we do, which links up to Gordon’s sterling work lobbying our elected officials.
So, as always, there are a number of big Government initiatives and consultations going on. Alongside examples like the Big Care Debate, there are other key issues other colleagues and I lead on, often within specialist areas like young people, substance misuse, and of course mental health.
Specialist? Bunk! Bunk I say! Mental health is categorically not a specialist issue, as not only is mental health something we all have and must manage, but the majority of carers are likely to experience some impact on their mental wellbeing as a result of caring. Which is why I’ve focused my efforts on the Government’s new 10-year strategy for mental health in England, New Horizons.
We’ve submitted our response to the New Horizons consultation (read it here) which finished on the 15th October. This was based on what carers, our network of Carers’ Centres, and other partner organisations said they wanted to see. We’re promised the final strategy from the Government before Christmas.
So why is this relevant for all carers?
Firstly, the New Horizons consultation document sets out the vision for mental health service improvement in England, making it extremely relevant to carers of people with mental health problems. But the other, loftier goal is to improve ‘whole population mental health’; in short, more prevention as well as better treatment.
Essentially, the Government aims to raise awareness of mental and emotional wellbeing, why this is important, and help prevent people from becoming unwell in the first place. To do this, we’ll probably need health promotion campaigns on mental health that will stick in the public mind (like ‘5 fruit and veg a day’ has for diet), and lots more besides.
Given that carers as a group often want and require emotional support, as well as running higher risks of mental health problems, it’s vital to get New Horizons to respond to carers’ needs as a priority group.
We need New Horizons to support carers with their own mental health and emotional needs as much as improved services.
I share Gordon’s upbeat approach about the world. I like to pretend to be a cynic, but can’t keep it up; curse my natural optimism! But for New Horizons, my optimism about what the consultation document says is slightly dampened by my fears about what it’ll actually do.
Call me naïve, but I believe the Department of Health (who authored New Horizons) do want to improve things for mental health service users, carers and the wider public. It’s in no-one’s interests for things to get worse. I like New Horizons’ messages about carers, emphasising carers’ vital role in treatment and need for services to support them too.
But how is this going to happen? There’s no new money to support implementation of the Strategy. There are no set targets for changes to be made – understandable given increasing decentralisation of health and social care, but worrying for those who feel that benchmarks need to be set for goals to be met.
After reading the whole document (all 130 thrilling pages), I’m left with the sense that without explicit targets and monitoring for the Strategy’s goals (perhaps tied in the with new Care Quality Commission’s upcoming mental health strategy), we’ll be asking for the same things again in 2020. And with the spending cuts promised by mainstream political parties, this looks increasingly likely.
What can we do?
Keep the pressure up, and make it clear to our MPs and Government officials that carers and their mental health needs are not a specialist, or perish the thought, optional area of public expenditure.
Keep pushing how services could be improved, and offering examples of how this works well in some areas.
And finally, keep the argument fresh in our MPs’ minds, as we move towards election day, that without supporting carers and their own needs, it’s not just carers who suffer.
This is not a specialist concern – carers’ needs are especially important.