Monthly Archives: May 2017

General Election 2017: Feeling Apprehensive

So I’ve seen the Bedroom Tax, PIP and a raft of other measures to make life harder for disabled people.  What impact has the General Election debate had, and where is this disabled voter left feeling as a result?  One word sums it up: Nervous.

Should the Tories be re-elected, further welfare cuts seem likely, and Jeremy Hunt seems to be making increasingly concerning noises about how long money can kept being put into the NHS and that’s only *if* the economy is strong enough to take it.  Having seen the impact of healthcare privatization in the US, that really scares me.  I fear being one of a class of people who faces an impossible choice between sky high premiums or poor coverage, and quite possibly ending up with both.

I feel quite frankly battered by cuts which seem to have impacted on my life in a number of ways and the thought of more of the same also really worries me.  Add to this the lack of attention given to disability issues in the coverage I’ve seen to date and i’m left feeling sidelined by the debate thus far. Where has been the attempt to speak to the ‘purple vote’? What reassurance have I been given that things will improve?

Debate around public services, especially the NHS, matter so much when you know that you will be regularly using services and the way they are run will have an impact on your daily life.  Social Care too is massive.  From an early age I have known that the shape of social care will have a direct effect on my life and I want to try and plan my life so that I can live it to the fullest.  Depending on the nature of the proposals, this could well effect the home you live in and the sort of life you can lead.  It can be very easy to feel marginalised as a result when these issues are not aired – because I know the impact will be felt.

There is perhaps better news.  This analysis by Disability Rights UK indicates that the party manifestos contain a range of proposals that are disability specific, some of which are more encouraging than others.  Though this isn’t an endorsement, it is also good to see the Labour Party support for the Social model of disability at a time when we seem to have regressed to a medical model of thinking which has become increasingly entrenched in some circles.

It is also becoming easier to engage with politics.  United Response have also continued their excellent ‘Easy News’ for the 2017 election, producing a highly accessible account of the election manifestos.  Debate has also been lively on Twitter.

My sense of unease is still there though.  In the closing days of the campaign it would be good to see greater prominence given to disability issues so that the ink that is clearly devoted to the manifesto pages can be bought to life.  At a crucial election, it is vital that we all get the chance to have an informed debate about the kind of society we want to be a part of, so we can all live life in an inclusive way with one another.

1 ‘Where is your carer?’ Service provision with disabled people

Reflecting on recent experiences, the following blog makes some suggestions about how to work effectively with disabled people.  I say with deliberately, as above all in order to be effective, any service provided for disabled people must be provided in collaboration with them.  In this day and age, it is not acceptable for disabled people to be ‘done to’ as merely passive recipients of a service over which they have no say, choice or control.  This blog is intended to help service providers in all manner of social care settings and beyond.

In this blog, I’ve focussed more on the principles of service provision rather than specific nuts and bolts, but will happily expand if asked to do so.  Feel free to get in touch if you have a particular question.

What not to do

  • Make Assumptions – the first and probably most fundamental thing that is needed is to engage with someone without having made your mind up first.  In a spectacular example, a hospital consultant was shocked to find Fran attending a medical appointment on her own and asked where her carer was!  As someone with a first class degree (which is better than mine, as she often reminds me!) she was both shocked and offended.  Don’t assume.  Get to know the person.

 

  • Have values and then don’t live up to them – The values of the organisation you are engaging with are key.  They set expectations and should establish the tone.  When I looked up the values for the wheelchair service we are dealing with they were listed as “care, innovation and compassion with fun.”  I did a double take and wondered if this was ironic – as the experience to date has been the precise opposite in every sense.  What is the point of having values when you don’t live up to them?  At best it is unhelpful, at worst it looks cynical and destroys trust.

 

  • Be inaccessible – This one works on lots of different levels including a) Physically – If I can’t get into your service then I won’t be able to use it b) Practically – life is busy so when providing a service for busy people doing things like giving all day appointment windows is not helpful in the least c) in terms of quality assurance – so many services have complaints procedures that are difficult to engage with and providers miss out on valuable feedback as a result.

 

What to do

  • Listen – Listen to what your customers tell you.  If you do that and work with them, this will go a long way to ensuring that a service is provided that a) meets the needs of the needs of the customer and b) leaves them satisfied with the result so chances are that c) they will have faith in what you do and how you do it. In so many instances, this basic act of listening doesn’t happen and I find this mystifying, especially when people wonder why the outcome or service provided hasn’t met the mark.

 

  • Learn – Be prepared to learn with your customers and do things differently.  This may entail doing things a bit differently on both parts and learning as you both go – but through the act of working together and learning from each other, both provider and customer will be better off as a result.  Most importantly is learning where things have gone wrong and how to make them better.  Generally, unless we’re talking utter gross negligence, its ok to make mistakes in order that things are done better next time.

 

  • Have flexibility – I love a good process and set of rules as much as the next person, but sometimes those rules need to be adopted for good reason.  A recent example is Fran’s wheelchair, where the cost of adapting the house and the time spent with professionals to date as a result has cost more than what was being asked for (with good reason) with little progress made.  With flexibility (and dare I say it, common sense!) there can often be better outcomes achieved in a more efficient way.

 

With a bit of thought, providing a good service for disabled people is totally doable and there are loads of examples of good practice out there.  An example of this is The Crucible Theatre in Sheffield.  Fran and I have been there on two occasions for the Snooker World Championships.  Here the staff are engaging, polite and well trained.  They talk with you and are helpful, without being patronising or intrusive.  The facilities are good and designed with thought for the needs of disabled customers.  As a result, we’re eagerly anticipating our third visit already.

The moral of the story? Provide a good service with care and thought and everybody wins.

 

2 The War Behind the Door

Hello.  It has been a while since I last wrote.  Apologies for my apparent neglect dear reader.  Life has taken over in lots of ways, thankfully a lot of them positive.

This morning I was lucky enough to be asked to appear on BBC Radio Cambridgeshire to talk about a piece of research by Scope which highlighted discrimination that disabled people face at football grounds.  This is something which I can relate to having unfortunately had previous experience of this, which thankfully, for me at least is very rare.  I was asked about the impact of such discrimination and this made me think about experiences that both Fran and I have had of late.

Fran’s on going battle to get a suitable wheelchair made me think that sometimes just getting out of the door is an achievement.  This is especially the case given widely cited figures that 900 people are losing their Motability cars each week thanks to government welfare reforms.  Add in to the mix the state of social care and that people can often not receive the care they need to have even the most basic levels of dignity day to day and you begin to understand that, whilst a home may be a castle, it may also actually be a prison.

The experience of negotiating with several healthcare professionals to try and make them understand the fundamental importance of having a suitable wheelchair for Fran has been a real eye opener.  It requires a crates worth of stubbornness just to be heard sometimes, let alone to make any progress.  I wonder how many people who lack the means or allies to have a voice are left.

Life happens too.  This week I’ve had a virus which, unusually, kept me away from work sick on Monday. The less than helpful response of my body was to make walking, no mean feat at the best of times, a virtual impossibility.  I hate days like Monday.  Sometimes your body just says no, and sometimes, just sometimes, I have to reluctantly admit defeat for the day.

My point?  That every day there are often silent battles going on for people just to keep their heads above water and get out of the door.  We need to find ways of making that everyday contest easier.  Each time I leave my house, I take a deep breath and vow to live the day to the fullest.  If you ever wonder why you don’t see people day in day out, it might just be because of their own war behind the door.

Thanks to Scope for setting in motion a train of thought.  I hope we can focus on solutions to make society a more accessible and welcoming place for everyone.