How do you buy a wheelchair? What benefits am I actually entitled too? Sorry, what is an “advocate”?

People’s health and circumstances change over the course of their lives. This can be to yourself or a loved one. But one thing is for sure; a change is gonna come.

Louis Speight of Ethos Disability gives us his thoughts on what we can do to make information more accessible. Photo credit: Humans of Leeds

There are currently 11.4 million people registered as being disabled in the UK, there are 6 million more people registered as caring for someone else. But whether you are someone with additional/changing needs or caring for someone who does, one thing is consistent: you are dealing with a new set of circumstances.

Often in this tempest of change, you are living from moment to moment, and each moment in of itself is all encompassing. You are passed around through various systems and processes that are at best disjointed. For example, local authorities govern social care, while health programs are run by Clinical Commissioning Groups. Oh and the third sector has various roles in between.

In Canada, they seem to be better at actually researching these things. One paper that I have always thought was very important was Reid et al (2011) – If I Knew What I Know Now – Raising a Child with Cerebral Palsy.

Here is a snippet:

Our findings suggest that parents of grown children with CP (Cerebral Palsy) have valuable knowledge that can assist future parents and service providers involved in pediatric rehabilitation, education, and recreation. Furthermore, this information has the potential to positively influence systems and policies.”

You would assume that the notion of experienced people have something to offer would be forgone conclusion – tell me something new Louis!

The equal dissemination of knowledge

But the reason that I bring it up is this – knowledge in these cases is power and inequality in its distribution is rife. Some people understand the processes; some people understand their entitlement and are benefiting from it.

Knowledge is power, and inequality in its distribution is rife. Clarity around how processes work alleviates stress. It is the unknowing that gets you.

I included myself in this group. I know how to go about buying a wheelchair, how much I can get in aid, where I can buy from and how long it takes.

Clarity around how the processes work alleviates the stress. It is the unknowing that gets you.

But the Internet is bridging knowledge inequality right?

Well not so much…

The World Health Organisation (WHO) found that only 15% of people searching for health related information checked the source. Additionally, recent studies found that only 4% of the most frequently visited sites verified their sources and published them. Despite this, Fox and Percell found in 2010 that 55% of Americans said that the health information that they found online impacted their choices about their health.

What we are seeing more and more is the rise urban mythologies around specific health conditions, as online communities spring up. Not sure about that? Check this out from the Independent.

In 2012, The Kings Fund made the following proposals:

  • See patients and service users as part of the care team,
  • Use information and communication technologies to revolutionise patients’ and users’ experiences.

To me, health and social care has been too slow to react on that last point. Social media and the internet has clearly already moved on.

If for example you type How To Buy A Wheelchair into Google, Gerald Simonds is one of the top results.

And for comparison – here’s a guide that I put together.

I’ve lost track of the amount of times, someone has stopped me in the street and asked me, “where did you get your chair from?”

I always, if I can, stop and explain where I got it from and how they can also purchase one.

For years, it has always been obvious to me that we are not doing enough to disseminate information. To make sure that it is accessible and equitable in distribution.

So what needs to change?

One of the best group of people that I have worked with in the health system is Walsall Health and Transitions Team. They recently were nominated for a national award.

What I like about how they operate is, they act like a single point of access for the young people that they work with. The young people can come to the team with questions, concerns and issues as they arise. Their remit is sweeping but their is trust and a sense of local involvement. The people in the team go out and act as bridge between the young people, new services, peers and the third sector.

Local multidisciplinary teams that are accessible are sadly not as universal as they should be. Additionally, they do not currently exist for the over-65s. Charities operating locally often try to fill the void (this is particularly true of advocacy) but the limitations of the third sector are clear; they are not medical gatekeepers.

The local provision needs to be accessible, responsive and multidisciplinary. The caseloads will always be smaller, the work more intensive, but that is how knowledge gets to where it needs to be.

The local provision needs to be accessible, responsive and multidisciplinary. The caseloads will always be smaller, the work more intensive, but that is how knowledge gets to where it needs to be.

People need confidence to ask a question and get an answer. Another thing that Walsall do really well is that they have a Facebook page. They meet the young people where they are (on Facebook) and engage with them through their medium. If you have that trusted accessible source available, then why would you go anywhere else?

They meet young people whey they are – on Facebook – through their medium. If you have a trusted and accessible source there, why go anywhere else?

We need to ensure people have the right information at the right time. We need to create local points of contact that are properly staffed and properly funded. But engaging with patients through Facebook costs nothing.

Inequality should not occur through the unequal distribution of knowledge.

Inequality should not occur through the unequal distribution of knowledge. This is not a question of money or resources, it is a question of ensuring that everyone knows the rules of the game before they start to play.

Knowledge is power after all…

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