It’s not Little Britain, it’s Better Britain

In his second blog, carer Colin Royle, talks about how a personal health budget has improved the wellbeing of his father Malcolm.  Colin will be talking first-hand about his experiences at Health and Care Innovation Expo on Tuesday 4 March in Manchester.

Whenever people are asked to change the way they do something, there is always a certain amount of fear and trepidation involved, and personal health budgets are no different.  Having experienced the incredibly positive effect that having a personalised package of care has had not only on my dad’s life, but also on our family as a whole, it is extremely important to me to try and ensure that other families and individuals have the same opportunities.

In 2011 I was invited to join the national personal health budget peer network.  Over the last three years we have worked in partnership with professionals from the Department of Health and more recently, clinical commissioning groups and NHS England to develop policy and good practice.  But in real life, what is good practice?

Officially, a personal health budget is NHS money allocated to someone with an identified health need to meet the health and well-being outcomes they have chosen during a personal health planning process – a way of putting the person at the heart of their own planning process to identify what it is that really matters to THEM.

So does this mean that somebody will be given a pot of money to spend on anything they like?  What if the things that people want sound ridiculous?  What if they want to spend it on football season tickets, or sky plus boxes, or fancy skiing trips?

I often wonder if people have watched too much of Andy and his carer Lou in Little Britain.  Lou selflessly dedicates his life to looking after wheelchair-bound Andy and Andy selfishly dedicates his life to making things as difficult as possible for Lou.  Whatever Lou seems to suggest for Andy, he chooses the opposite.

‘I don’t want that one, I want that one!’ is his famous catchphrase.  Will people with personal health budgets be as flippant with their money?  Is this right?

When somebody wants to spend their money on something you may consider unusual, maybe you should simply ask them why.  Take my dad, Malcolm, for example.

The vast majority of his package of care has been spent quite traditionally.  We employ five carers who look after him in his own home.  Doesn’t sound so out of this world, right?

But what having a personal health budget has allowed him to do however, is have choice and control over who it is that provides his care.  We are no longer at the mercy of an agency that choose which staff to employ, and what hours they can provide.  Staff are now chosen by ourselves as a family, working the hours that suit Malcolm.

But parts of his budget have also been spent on more unconventional items.

Suffering with severe dementia, my dad is no longer able to go out and enjoy what most of us like to do on a day to day basis.  He can no longer go for walks as he struggles with mobility due to his lack of depth perception.  He can no longer go to football matches due to the large crowds and loud noises.  He can’t enjoy the cinema anymore as he becomes anxious in unfamiliar surroundings.  These are all hobbies that he has gradually lost over the last three years.

Because of this, TV has become more and more important in his life as a form of entertainment, yet adverts make him anxious due to the loud noises and bright colours they use to get your attention.  So using his personal health budget, we purchased a sky plus box.  This allows us to record his favourite programmes, broaden his TV viewing and fast forward adverts that create anxiety.

Of course the thought of spending health money and people’s taxes on a sky plus box has raised questions, yet the outcomes have been incredible.  My dad now has more choice and control over the programmes he chooses to watch, at the times he chooses.  This in turn helps to stimulate him by engaging him, which in turn helps to reduce his anxieties, ultimately helping to keep him safe – and all for a mere £35 one off payment.

£28,500 a year used to be spent on my dad attending a daycentre.  He stopped going in 2010 as he didn’t enjoy it – it created a lot of anxiety, had activities that didn’t interest my dad, and for various reasons, failed to meet his needs.  Yet nobody ever questioned it – why?

Of course Little Britain is a comedy, and the characters are fictional.  In real life what we are dealing with are people who have complex lives and complex needs.  I guess it’s only natural then that sometimes we’re going to need some unconventional solutions.

Allowing people to be at the heart of their own decision making and giving them more choice and control is so empowering.  It’s not just about what somebody buys with their money, it’s about making the decisions around why they need it, trusting that person to know what it is that is most important in their own life.

Personal health budgets won’t create a Little Britain scenario, but if implemented correctly, allowing more choice and control, perhaps they can create a Better Britain.  Is that really so frightening?!

Colin Royle

Colin is a co-founder of Peoplehub CIC – a not for profit organisation made up of people with lived experience of receiving a personal health budget. Peoplehub are a strategic partner to NHS England in the implementation of personal health budgets and Integrated Personal Commissioning and also work with Clinical Commissioning Groups in setting up local peer networks that enable genuine collaborative working.

Colin was previously a carer for his father Malcolm for seven years until he passed away in April last year. Malcolm suffered from a rare form of dementia and started receiving a personal health budget in 2009.

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  1. pat grey says:

    Dear colin,
    thanks for this. My mother has early stage demetia and lives in Manchester, I live in Kent and go up every few months to help. My brother has just moved in with her. She has a social worker. How do i go about getting SS to discuss and agree this personal health budget? Dont know where to start??

  2. Smriti Singh says:

    Thanks for this Colin. It is really clear and well written. I am working with CCGs in London to introduce personal health budgets and am encountering a lot of concern and scepticism. Being able to refer to your and Malcolm’s stories is a huge help!

  3. Norman Mc namara says:

    This is so well written and may make sure others will understand this path a lot better regarding direct payments, thank you Colin