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.
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.
Parent carers of disabled children have often been treated slightly differently from other carers by health and social care. 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.
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.
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.
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.
I was at a meeting with Seb Coe the other day discussing Olympic ticket prices and it brought back thoughts I had last year 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.
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.