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The silent enemy: How PTSD damages our soldiers

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

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February 6, 2014 Posted by | Health, Mental Health, Relationships | , , , , | 3 Comments

The great final leveller – Making end of life care fairer

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.

Moira

 

Note:

We are supporters of the Dying Matters Coalition. More information is here

March 21, 2012 Posted by | Relationships | , , | Leave a comment

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 stretchingCarers are already doing their bit 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/

January 24, 2012 Posted by | Relationships, Social Care | , | 2 Comments

Councils: Do your duty to parent carers

Parent carers of disabled children have often been treated slightly differently from other carers by health and social care.parent carer This can stem from local authority children’s’ services having responsibility for disabled children meaning adult services, responsible for carers, are often not involved in supporting the family. This can mean parents carers are not identified or receive support as carers.

The Every Disabled Child Matters (EDCM) campaign has made huge strides in getting recognition for parent carers and local authorities now have a legal duty to consider the needs of parent carers and whether they would benefit from breaks from caring. This new legal duty came into force on 1st April 2011.

Now as everybody knows, 1st April is April Fools’ Day when people are tricked into believing something that is not real. Carers may feel that this happens all year round for them and this new legal duty is just another false promise.

But this new law may have real bite because local authorities must provide a range of services including:

  • day-time care in the homes of disabled children or elsewhere
  • overnight care in the homes of disabled children or elsewhere
  • educational or leisure activities for disabled children outside their homes
  • services available to assist carers in the evenings, weekends and during the school holidays

If your local authority is not providing any of these, then they are breaking the law. However, a few parent carers are saying that their local authority is refusing to assess their disabled child, which makes it harder for carers to get respite. EDCM have published a letter and a guide that parent carers can use to make sure their disabled child is assessed.

The Government are also putting pressure on local authorities by requesting they prepare a statement by 1st October 2011 setting out details of:

  • the range of respite services provided
  • any criteria by which eligibility for those services will be assessed
  • how the range of services is designed to meet the needs of carers in their area.

If you’re a parent carer, ask your council to see their statement and make sure they are doing their duty by you.

Take care and take charge

Gordon

September 26, 2011 Posted by | Health, Relationships, Social Care | , , | 2 Comments

Prime Minister celebrates Carers Week

Note: The following post is from Beryl Cross, Head of Operations at The Princess Royal Trust for Carers

The Prime Minister hosted a reception for about 150 carers at 10 Downing Street yesterday to celebrate Carers’ Week. I Number 10was there with carers and staff from our Carers’ Centres. You had to be very brave to fight through the melee to get to the Prime Minister, or in Louise’s case perhaps have someone like me to push you in the back to make you do so.

Louise is a young carers who is supported by our Bromley Carers’ Centre, and she gave David Cameron a letter she had written explaining her experience and ideas for supporting young carers.  Moira Fraser, our Director of Policy, was also straight in there, highlighting to David Cameron the need for government to take action on getting NHS money for carers breaks delivered to carers and raising our Give Carers a Break campaign. And it seemed to work as in his speech later in the evening the Prime Minister said the government should “follow through” on getting Primary Care Trusts to use that breaks money for carers.

He also made reference to his own experience as a carer for his son and he gave “a huge thank you” to the carers there for what they do. There were many other Ministers there including Nick Clegg MP, Paul Burstow MP (Minister for Care Services) and Steve Webb MP (Minister for Pensions), plus Tony Baldry MP co-chair the Parliamentary Group on Carers and other MPs who have supported carers in Parliament. They also recognised the massive contribution made by carers.

Jack Dromey MP also asked the Prime Minister about carers during Prime Minister’s Questions yesterday to which the PM responded:

“Everyone in the House should welcome the fact that it is carers week. I will be having a reception in No. 10 tonight to celebrate carers week with many people who take part and who are carers. This Government are putting in £400 million to give carers more breaks and £800 million specifically to make sure that those looking after disabled children get regular breaks.”

Thanks

Beryl

June 16, 2011 Posted by | Carers Week 2009, Relationships, Social Care, Young carers | , , , , | 5 Comments

Carers show the true face of caring

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

Young carer helping his brother

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.

Take care

Gordon

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.

June 14, 2011 Posted by | Benefits, breaks for carers, Carers Week 2009, Relationships, Young carers | , , , , , , , | 3 Comments

Mitigate risks with more information

At the same meeting with charities and the Department of Health that I talked about in my last blog, we also discussed the regulation of care providers and personal assistants. Currently in England, if a person hires an individual who is not employed by any agency, charity, council or company to provide care, then that person – a personal assistant – does not have to be registered with the Care Quality Commission (CQC). This can be if the person is using their own money or a council funded personal budget or direct payment.

Some people were in favour of this as individuals should be able to employ whoever – friends, non co-resident relatives, neighbours etc – they want without that person having to go through the lengthy and expensive registration process. It may be that this is the right choice for the family and provides the most appropriate care.

However, there were other people horrified at the risks involved in this. What if the budget holder doesn’t employ a friend or relative but sees an ad in the local paper and hires a perfect stranger who doesn’t have to be registered or go through regulatory checks? You could be increasing the opportunity for vulnerable people to be taken advantage of.

And what if this stranger was actually being hired by numerous people and it was like a full-time job for them? There could be multiple opportunities for abuse.

The key phrase here is “vulnerable people” meaning people who may not have the capability to make safe choices for themselves. In response, some will ask what gives us the right to decide who has the ability to make safe choices or not? We should not assume that people with disabilities cannot make informed, sensible decisions in their own best interests.

My view is this. Individuals should be able to hire whoever they want – friends, relatives, neighbours, strangers even if they are not registered with the CQC. However, there is a risk that people may make unwise choices (even those who we don’t consider ‘vulnerable’ may do so). What mitigates this risk is information.

If we think there is a danger that they might make unsafe choices, then let’s help them understand the choices they have and decrease the chance of them making poor decisions that could lead to abuse. People should have access to brokerage and support services that know the local area, people and providers and can help individuals find the people and services they want. And part of this may be advising them who is and who is not registered with the CQC.

This won’t mean that nobody will ever make a bad or unsafe choice that will lead to them suffering harm. Unfortunately, no matter the system, abuse will always happen. It happens now even with people who work for registered care providers.

Take care

Gordon

March 29, 2011 Posted by | Health, Mental Health, Relationships, Social Care | , , , | Leave a comment

Can volunteers be equal to professionals?

Along with various other charities, I was at a meeting with the Department of Health to discuss the Government’s

Carer pushing wheelchair

upcoming vision for volunteering in health and social care.

One of the first things raised as being most important was that we should treat volunteers like professionals. They should not be viewed as being of lower standard and they and the roles they do should be treated seriously. We all say aye.

Later, and separately, it was pointed out that many people are put off volunteering for organisations because of processes they have to go through. They may have to complete forms about their interests, skills, employment history or go through a Criminal Record Bureau (CRB) check. Some charities will ask for references.

Some said that potential volunteers can be put off by this, maybe even offended that so many questions are being asked of them, when all they want to do is help out a couple of hours a week. Ah yes we all said, this is definitely a problem.

But is this not treating them and the role they will do as equal to paid staff and their roles?

The Princess Royal Trust for Carers and Crossroads Care have campaigned for carers to be treated as equals to health and social care professionals. What they do can be highly skilled and requires training and experience. Again, aye to that.

But we also campaign for friends, relatives, neighbours or volunteers to help carers (if the family want it) because carers can often be struggling alone without any help. This seems reasonable to most.

But by saying you have to be trained and skilled to provide care, are we discouraging people from volunteering to help? Do we encourage the thinking amongst people that there is nothing that they can do?

Now the following facts may be not be caused by such contradictions highlighted above, but they are surely related.

In the Household Survey of Carers 2009/10, 66% of carers said they would need a friend or relative to look after the person they care for if they wanted a break overnight. Of these carers 42% had not actually ever managed a break of two days since they started caring and 16% of carers said that they had nobody they could turn to who would help them take a break.

Now some will say that friends or family or volunteers shouldn’t be the ones providing help, we should be using paid care workers, but that only highlights the hypocrisy of saying that volunteers should be treated equal to professionals. To me, these statistics show there is a need, but I’m not sure how well we’re helping carers to meet that need.

Take care

Gordon

March 18, 2011 Posted by | Big Society, Relationships, Social Care | , , , , , , , , | 1 Comment

Meaning of Life

I was at a meeting with Seb Coe the other day discussing Olympic ticket prices and it brought back thoughts I had last tennis courtyear when I went to Wimbledon for the tennis. Wimbledon is one of those things that you hear people say “oh, everybody should do it at least once”. I thought they were right, so last summer I camped out for centre court tickets.

Wandering around bathed in sunshine and pleasantness, I found myself agreeing  that Wimbledon really is something that everybody should do at least once in their life. But my Centre Court ticket was £72 and I remember thinking that for some people, they just couldn’t afford to do that.

Some people may look at the amounts people get from benefits and think that they could live on them. But the question is what do we mean by ‘live’?

During the meeting with the London Organising Committee for the Olympic & Paralympic Games, it was clear that  LOCOG’s responsibility is to put on the Games without needing even more financial support from Government. They may want to and are giving financial support to disabled people who want to attend events and need a second ticket for a carer, but they also have to sell tickets.

Benefits can be enough to live on, but they may not be enough to allow people to participate in those events that make up part of our nation’s life – Wimbledon, London Olympics, premiership football matches etc. The things that people say should be something everybody does, become things that some people cannot.

Wimbledon does have £12 tickets for outside courts, lower football division games can be a fifth of the price and Olympic tickets will start from £20. Having been to Centre Court and to West Ham-Liverpool recently, I would now rather go to the outside Wimbledon courts and watch Queens Park vs  Montrose.

But I can say that because I have had the good fortune to have afforded the experience of these top events. Other people will never have had that experience. And that is what life is all about – a variety of rich experiences.

It is impractical to suggest that Government must now start paying people for the best seats in the house at all the top cultural and sporting events in the country. And some rich experiences are free or cheap – beautiful parks and gardens, museums and art galleries, libraries and leisure facilities.

However, there are other things that are not and when we consider how much a disabled person needs to live on, I would like to think that we are imagining a life full of rich experience, and not just one of existence.

Take care

Gordon

March 7, 2011 Posted by | Benefits, breaks for carers, Relationships | , , , , | 5 Comments

New Challenges, New Hopes for 2011

Note: The following first blog post of 2011 has been written by Carole Cochrane, Chief Executive at The Princess Royal Trust for Carers

I was extremely fortunate to spend the two weeks of Christmas away on holiday. After a scary drive to the airport my husband and I were delighted when the airplane was finally de-iced and we were able to take off leaving the snow and madness of the holiday season behind us. What struck me whilst on the holiday was just how many people were at the hotel who were obviously carers away with the cared for and in some cases the family.

There was a young mum Chrissy who was on the holiday with her 10 year old son who was severely disabled, Chrissy was also accompanied by her mum.  When her son had been younger she was offered lots of respite – more than she needed she told me.  However, now her son was older and heavier to carry respite was almost non-existent and she now relied on her mum and a few good friends.

Chrissy’s son is tube fed and the rucksack with the feed was constantly on the back of his wheelchair.  Chrissy told me that some airlines charge extra to transport the 25 kilo of feed she needs to bring away with her. She told me that the room they had been allocated was fully accessible and indeed they had selected the hotel and the resort on recommendation of its accessibility. Chrissy explained that the key to her getting away was planning, planning, planning and of course saving hard to pay for the break.

Chrissy’s mum was obviously incredibly close to both Chrissy and James but I couldn’t help wondering what will happen as she herself becomes older and not able to offer the support she currently does.

I got chatting to a young carer Elsa who was on the holiday with her mum who had suffered a stroke, like many young carers Elsa never strayed far from her mum’s side, always making sure she had everything she needed and I saw her keeping an eye on her, even when playing in the pool with other children.  They told me this was a rare treat and were trying out many new things to see how independent mum can become, because Mum doesn’t want Elsa to lose her childhood.  Thankfully, Elsa does attend a young carers’ project and is well supported by her school . They had been overwhelmed by the support of others who ensured they enjoyed the break, overcoming their own fears of how they would cope.

On the flight home I sat next to a couple who told me they had a son with autism who was now in residential care.  Clearly they were still carers even though it was different type of care to when he lived at home.  They told me they were really concerned about the  government taking away the mobility allowance for those in residential care as it was the trips out that their son most loved and calmed him down.

The holiday made me realise how lucky I am and how nice people can be, caring and looking out for each other. I also realised that whilst 2010 had seen some wins for carers, promises of additional respite money etc., if we are to get a fair deal for carers and those they care for then 2011 will be another year of challenges.

January 10, 2011 Posted by | Benefits, breaks for carers, Relationships, Young carers | , , , , , , , | 21 Comments