“Every day carers are carrying on…”

Note: As we bid farewell to Gordon and welcome Moira Fraser as the new permanent blogger, here’s a post from Moira introducing herself.

Well, those of you who read regularly will know that Gordon, the man behind Carersblogs, has packed his tartan hanky and headed off to his new adventure in Cambodia. We’ll miss him.

But with every ending there is a new beginning, as they say. So, here I am, and I hope to have the pleasure of your company  whilst I ponder the bizarre world that is health and care policy, and the strange corridors of power in Westminster and Whitehall.

Caring and disability issues are close to my heart.  For the first 27 years of my life, my mother  taught children with learning disabilities in the local special school in Peterhead –  a fishing town  in Scotland about 30 miles from Aberdeen. Sometimes, if the child had severe disabilities and the family did not want their son or daughter to go into residential care far from home, they would stay in my mum’s unit  for many years as it was the only local service for them. I got to know these families – not just the children but also often their mums and dads and other siblings – pretty well over the years.

What the experience of  growing up in this environment taught me was not only about the immense challenges faced by families , and the struggles in getting the right support, but also the difference that good local service, run by dedicated staff who really care about the people they work with, within a strong community support network, can make.

And the other thing I was left in no doubt about was this. Every single one of those children , whatever  their disability, was loved and valued and every single one of them  really mattered. Their triumphs and victories were about learning to walk, learning to say their name, learning to put their clothes on, or learning to use the loo or but they were real victories, often hard won, and worth every bit as much as my fancy exam passes. And with them, their families and my mum and her staff,  I learnt to celebrate these victories, and respect them for the individual people they were.

My mum died many years ago now. I still miss her but she gave me something that I’ll never lose – the desire to play my part in making sure disabled people and their families are respected, valued, supported and celebrated.

There’s lots happening. Benefit reform, social care, NHS struggles still not resolved. And whilst I surf the never-ending wave of announcements, trying to figure out what it all means for carers and local carers services, I have to remember that out there, every day, people are still not getting the support they need. Every day carers are carrying on, carrying on despite all the hardships, because there is no other option.   Keeping that in mind keeps me focused on what matters.

Back to policy blogging next week – but I hope this has helped you see who I am and where I’m coming from. I hope, at least to some extent, it’s the same place as you. If I ever forget it then you must remind me.

Until then, as Gordon used to say, take care.

Moira

The thread that connects carers, ex-carers and their supporters

Where I’m from in Scotland, Perth, is the home of the Black Watch regiment. This regiment has a long history stretching back centuries and has a notion of a ‘golden thread’ that connects all current and ex-soldiers in a single narrative – the history of the Black Watch.

I feel this same sense of shared history and common purpose with people who work to support carers. Once you have been a carer or worked to support carers, you become part of something that lasts even if your caring or work role ends. You never stop caring.

When I joined the carers’ thread, the first two carers I met were Martine and Freya. I still remember being rather dumbstruck when listening to them. It was a guy called Stewart who introduced me to them and helped me understand the issues. But more importantly, it was his passion that affected me. He was utterly selfless in his efforts to support carers.

Since, I’ve met other people who have joined the carers’ thread and seen how their passion and determination has grown. As I leave working to support carers, I think the thread is stronger than it ever has been.

In my fourth ever blog, I recounted how I had arrived for a meeting at Parliament to find a note on the door at the end of the corridor telling me it was cancelled. This feeling of having struggled along a never-ending road to find that when you get there, the door is shut is too  common for carers.

In my first blog, I said that there was no single magical solution to solve all the different problems that each carer faces. This means that we can’t just kick the door down once, we have to do it over and over again for every individual carer. Sometimes this will mean that while we make progress for some carers, others may not benefit.

But with more and more people waking up to the issues that carers face there are more and more people trying to kick down the doors. One day, there will be more people kicking down doors than there are doors. That thought may seem far away for many carers, especially when they are struggling alone.

But they should know that they are not alone. They too are part of this thread that connects carers, ex-carers and everybody working to support them. You may not know it and you may not feel it, but there are many, many people who care about you.

Take care, and goodbye

Gordon

PS: I, and my partner Claire, are starting a new blog for when we’re working in Cambodia: http://phnompenhpal.blogspot.com/

A chance to change the social care system in England

For years we’ve been campaigning for a total change to the social care system in England which has been with Government inactivity. But now, there is a chance.

Government health ministers, Andrew Lansley and Paul Burstow, are generally supportive of the recommendations made by the Dilnot Commission. And they would be supported by Labour if they implemented these recommendations.

“…the next time we read about carers breaking down because they receive no support, we will blame you”

But the person we need to convince is George Osborne, Chancellor and the man who manages Conservative political strategy. Implementing the changes would cost £1.7bn p/a which is a lot of money but equal to only 0.25% of total current Government spending.

When the Government can find £1.05bn from nowhere for bins and council tax freezes then we cannot allow Osborne to use the excuse that there is no money to pay for this. Make social care a priority and find the cash George.

The message we need to give George Osborne, David Cameron and other MPs is this. If you do not implement these recommendations, then the next time we read about carers breaking down because they receive no support, we will blame you. The next time we read about people receiving shockingly poor levels of care, then we will blame you. The next time we hear of councils cutting vital services because they have no cash, we will blame you.

With power comes responsibility. Osborne and Cameron have the power and the opportunity to improve the lives of millions, they must take responsibility for doing so.

But we each have a role to play. Whether you need social care support now or not, at some point you or your family will. We have a responsibility to our friends and family to make sure we grab this chance for change.

We’re organising a mass lobby of MPs on 6^th March. People from all over the country will have the chance to meet their MP in Parliament and lobby for better social care support in England.

Get involved and make change happen. http://carelobby2012.org.uk/

Take action

Gordon

Social care in England is broken, not just fragmented

This post has been written by Moira Fraser, Director of Policy at The Princess Royal Trust for Carers

The Prime Minister’s  been saying a lot on domestic policy recently. I wonder if he was saving it all up over the Christmas break, making notes in between his turkey and plum duff. He’s been wading in on a few issues which he normally leaves to others, which have  hit a bit close to home on the caring front.

Over the weekend he made what was apparently an off the cuff quip about Tourette’s syndrome. Maybe some people found it funny, but I bet people with Tourette’s and their families didn’t. Most people with a disability will tell you about the names they’ve been called  or the humiliation they’ve had to put up with, just because they look different, need different things, talk differently, behave differently. Making fun of someone’s disability  to score a couple of laughs just isn’t on, and if you’re the Prime Minister, frankly, you should know better. Zero points, Mr Cameron, for disability awareness.

We’ve been talking about joined up care for as long as I can remember

And  last weekend he was on about health and social care and how they need to be more joined up. He wants to make it a priority, as care in England  is too fragmented .

I’m delighted he’s taking an interest. We desperately need our political leadership to social care right at the top of the list as a major priority to be addressed. He’s absolutely right that the artificial boundaries between health and social care make no sense and act as a barrier. I can’t tell you the number of times I speak to carers who are stuck in the middle, making never ending phone calls to different departments trying to put together all the pieces of the jigsaw puzzle. It’s no wonder carers don’t access support for themselves- by the time they’ve got the essentials in place for the person they care for, they’re exhausted, just can’t face it, or think there’s no blooming point.

But it is a bit odd, all the same. We’ve been talking about joined up care for as long as I can remember. We have pooled budgets which are supposed to mean health and social services plan  together. We have jointly agreed care plans and in some places care trusts which bring all the services together. And whilst there are successes,  they’re there because the local leadership pushes it and people on the ground are fully, root and branch, committed to making it work. In many places it’s still very much  a case of the right hand having no clue what the left hand is doing.

At the same time, the Health and Social Care Bill drives policy in the opposite direction – removing more and more central direction, and removing the need to have the same boundaries for health and care authorities. We lobbied hard on this, including talking to the PM about it directly,  because  where families need to work with multiple services – for example,  adults and children services, health trusts, education services, all at the same time –  creating extra confusion doesn’t  help and people who are the most disadvantaged get missed.  The reorganisation which health services will have to go through following the Health and Social Care Bill is going to make things a lot worse at least in the short term. I’m worried about how we will make sure everyone gets what they need whilst the NHS is trying to figure out who’s in charge and who works for who.

It’s fantastic that the PM  has spoken about the importance of social care, and of integration. If we can find ways of achieving better joined up working, let’s do it. But I’m worried that his comments suggest that if we all try a bit harder to work together then the social care system might turn out not to be quite so broke and therefore not need fixing, meaning we can shelve the difficult decisions for another day. No matter how much integration there is, social care in England needs reform and needs more funding. Let’s keep our focus there.