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Hold the front page! – Colin Royle

Carer Colin Royle looks after his dad, Malcolm, who was diagnosed with dementia in 2005. In his third blog instalment Colin talks about how Malcolm’s personal health budget is spent – not quite as controversial as some headlines might suggest.

2013 was a good year for my dad, Malcolm; well as good as it can get in the present circumstances.  He didn’t score the winning goal in the FA cup final.  He didn’t become the first man to knock out Carl Froch on the way to winning the IBF Super Middleweight title.  And he didn’t cure cancer. I guess he didn’t do anything that was particularly headline grabbing.

So what did he do that was so amazing?  Well, he didn’t go into hospital, he didn’t get any notable illnesses, he didn’t hurt himself or anybody else in any noticeable way, and he remained living at home.  Amazing right?

When my dad began suffering with early onset dementia at only 60 years of age in 2005, his life and that of our family was about to be transformed forever.  Within two and a half years, he had lost the ability to drive, to feed himself, to clothe and bathe himself, and even to take part in most conversations.  He was growing increasingly confused by the day and at the beginning of 2008, had to be hospitalised under section due to the threat that he was posing to both himself and others.  Yet in the August of the same year, we took the brave decision as a family to care for him at home.

Fast forward several years and his deterioration has continued.  Dementia is often characterised in the media as memory loss but unfortunately it’s some of the more complex needs that you hear less about in the news.  His behaviours are now extremely unpredictable, he suffers with dysphagia and thus struggles with his swallowing, and he also struggles with mobility issues due to his lack of depth perception.  How could anybody who might fall down stairs at any given moment, who is so susceptible to pneumonia, and whose moods change so frequently possibly live at home?  With his personal health budget, that’s how!

When the media first cast its eye over personal health budgets, the focus was all about the radical things that were being purchased by people who were being given NHS money – public money – to spend how they like.

  • ‘Man spends NHS money on football season ticket’
  • ‘Personal health budget used for haircuts!’
  • ‘Sky plus box bought with public money!’

It catches your attention doesn’t it!  But what such headlines fail to capture are the underpinning values and successes of personal health budgets.  If implemented well, they help to enable people to be at the centre of the decision-making around their own life.  They help family carers receive the respite that they so desperately need.  They can provide stability and security for people who have had anything but, due to such debilitating illnesses.

We could create some headlines of our own if you like? Taken from a three year pilot evaluation!  For example, did you know that personal health budgets:

  • Reduce hospital admissions
  • Have been proven to be cost effective against traditional services
  • Improve feelings of wellbeing for both carers and people in receipt of care themselves.

Unfortunately, this sort of headline doesn’t make the front page of your daily tabloid.  But the truth is it’s the difference they can make in people’s day to day lives that really grab MY attention.  Take my dad for example.  We employ five members of staff – two of whom have now been caring for him since he started receiving his budget in 2009, and all of whom have been supporting him for over two years.

Despite my dad becoming increasingly ill, the fact that he is surrounded by people who care about him and understand his needs means he is at much less risk than in 2008.  Quite remarkably, he still manages to engage in hobbies that he likes, still manages to go for walks that give him exercise and, as aforementioned, still manages to stay living at home!  Since receiving his budget in 2009, he has only ever had one hospital admission that is related to his dementia – staggering for somebody with such complex needs.

We’re hoping that 2014 is another good year for my dad.  He’s probably unlikely to score the winning goal in the FA cup final this year either, but as long as he can remain living at home, being surrounded by people he loves, and keep living something of a normal life, then we’ll consider that a success.

‘Man with severe dementia lives relatively normal life thanks to his personal health budget!’

Now surely that’s worth writing home about!

Colin will be talking first-hand about his experiences at Health and Care Innovation Expo on Tuesday 4 March in Manchester.

For more information on Innovation Expo 2014 go to: www.expo.nhs.uk and follow all the news as it happens on Twitter @NHSExpo #Expo14NHS

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3 comments

  1. don jones says:

    well done Colin Royle i am so pleased to read your story i am a family carer i look after my sister an adult with server learning difficult autism we have what is known as a direct payment for the last 14 years this has transformed my sister life like your dad we employ five carers most have been with her since we started love her know her little habits give her as near as possible an ordinary life as Churchill said give us the tool to do the work .
    don

    • Anonymous says:

      Hi Don,
      That’s terrific to hear, so pleased it has worked for you! I used to work for the National Autistic Society so know a little of the challenges faced with autism, although know from personal experience how much this is multiplied when caring for somebody you love. You do wonderfully well to continue to care for your sister!

    • Colin says:

      Hi Don,
      That’s terrific to hear, so pleased it has worked for you! I used to work for the National Autistic Society so know a little of the challenges faced with autism, although know from personal experience how much this is multiplied when caring for somebody you love. You do wonderfully well to continue to care for your sister!