15 August 2017

Joining together to press for larger loos with hoists

In composing the title I realise how boring this blog will be, but sometimes the most boring things affect us most! This issue has been an inconvenience for years and it's good to know that a national campaign is coordinating pressure for this on the internet and gives us a chance to contribute to solutions.
http://www.changing-places.org/ is a website sponsored by Mencap to promote fully accessible loos with lots of space and equipment, like hoists, for those of us not able to transfer without aids. On the website you can look for such loos by geographical area and also have a chance to alert fellow users to ones not already listed. This site is a great help when planning a day out somewhere new in order to find out when you can make a loo break.  There's a regular email newsletter too with opportunities to contribute to the website map.
Mind you, those updating the website can't be held responsible for the whole experience! For instance, we were excited to find there was a Changing Places loo at Cribbs Causeway in Bristol as we had previously struggled with an inadequately sized one there. However the map was unclear about the exact location and we struggled to find the room for a good 20 minutes as it was off the main thoroughfare and staff at Cribbs weren't in the know. Then when we did find it, the room was so full of clutter, I could hardly get my powered wheelchair and small hoist in there! However solutions were found at high speed and all was well!
Of course there are not nearly enough yet of Changing Places toilets to solve our problem and give us an equal chance of a good day out, but the need becomes more urgent as local authorities take the austerity route and close their public toilets across the country- usually the ones built to a high specification and building regulations!
Make the Changing Places website a regular visiting place!

14 August 2017

The demise of Tourist Information Centres - online information no substitute for local knowledge

Have you noticed how completely Tourist Information Centres have disappeared from the High Streets of our cities and seaside resorts in recent years?

I understand this is because of local authority cuts since they have previously funded them and also the trend to put more information online.

How has this affected disabled people particularly you may ask? For us the local TICs were the first port of call when we went to visit a new place – the staff could tell you about accessible accommodation, accessible places to visit and often had leaflets produced by local disabled people’s organisations about other local accessible places to visit such as cafes etc. In addition the staff in TICs often took great pride in hunting down information about access for you and of course always knew where the accessible parking and loos were.

We are told the answer is to go online but it’s not quite as simple as this. Firstly, when you type in obvious headings for Google you can find several variations of a theme because local businesses etc have had the idea of a website to publicise their own particular attractions but not in a universal format. Once you have selected the appropriate site you find it doesn’t work like those sites belonging to TICs previously because there is no one to staff them so accommodation is harder to book and information like accessible leaflets is not available in hard copies.  Also many disabled people may not have access to the internet easily so can’t connect and explore. Sometimes one gets a throwback to TIC access from the occasional site which is a real thrill – last Summer I requested by email some information about access and found an enthusiastic council worker who was keen to help me directly despite not being in a TIC!

For hard copy, we now only have stands of leaflets with everything mixed up to show small commercial attractions with the odd National Trust site mentioned. How can one select from that literature, with varying amounts of access information, where you should go on a short visit to the area? Often it is the unmentioned hidden garden or small car park which shows you the best place to visit. Finally of course, gone are the reasonable locally produced goodies previously sold by TICs for the presents to take home! Now one must search local shops to make a selection.

So life won’t end because of the demise of TICs but just a little bit of the quality of life as a tourist in the UK has decreased for some of us through these changes!

2 June 2017

Social care at the election: not just a dementia tax

It’s not often that social care policy grabs the national headlines and even less often when it grows from the details of a political party manifesto.

It’s interesting therefore to see, on an issue directly affecting one’s personal circumstances, how the news coverage feels and reflects the situation one is in, although celebrating its headline status.

First, why was it ever dubbed the ‘dementia tax’ when there are many of us with long term physical conditions affected by the policy?

The cost of paying for intensive care support at home is just as likely to affect working disabled people as their conditions deteriorate.

Another difficulty has been the politicians' justification of the term ‘wealthy’ to describe those people with houses worth more than £100,000 when this does not cover the cost of a house in most parts of the country. I’m not sure if these were politicians with duck houses worth most of that!

Finally it seems to belittle the situation one is in and the planning one has done to cover the social care costs in preparation for retirement. For example I have been planning for this eventuality for 25 years since it became obvious it would be a reality if my long term family carer was no longer able or willing to provide support.

I estimate, as a person with social work qualifications, that it would cost £75,000 a year to meet my 24 hour care costs. How can we prepare for such eventualities without family wealth to draw on?

Since they started in the 90’s I have always saved and not drawn on the annual ISA tax free allowance. In addition a dozen years of a fairly generous money purchase pension topped up with voluntary contributions has become more flexible with recent pension legislation. So I have chosen to keep this as a lump sum and rely instead, for my current living costs, on the state pension and DLA.

Of course what we all, who are in this situation, need is a ‘cap’ on expenditure on care costs so that we don’t fear living beyond our resources. This will also I understand allow social care insurance to have viable options. Sir Andrew Dilnot, whose interparty social care commission previously had the ‘social care cap’ agreed and enshrined in the 2015 Care Act, has offered sound advice in recent days. He encourages us to keep up the pressure on this issue until after the election so that it can be proposed in the newly promised government green paper and become a policy proposal for implementation this time.

12 May 2017

Vote disability

It’s not so long ago and certainly within the lifetime of many of us as disabled people that polling booths in the UK were not universally accessible and it wasn’t seen as a problem.

I remember a village near here which used a caravan as a polling booth and no one wondered how we should get into it!

Now society understands the principle of disabled people’s rights and so it is easy to challenge if physical access has been forgotten.

Now it is possible to get easy read manifestos and guidance on voting  to enable people with learning difficulties to participate easily.

There are still disabled people who choose to go to the polling station to continue to make the point about our entitlement to vote with the rest of society. I confess to having moved to a postal vote myself as this has become a more mainstream way of voting and it all works smoothly for me. This time I noticed you could apply for a signature waiver if needed and as I have difficulty signing now I have asked for this option. It was quite straightforward to apply via email, telephone or the council website so hopefully it will be ready for me by the general election.

Some disabled people may want to be more politically active around election time and Disability Rights UK have suggested the following questions are in our interests to ask election candidates:-
1. Are you committed to the rights of disabled people to participate fully in society?

•    In practice, if elected, would you work with disabled people and our organisations on an action plan, with short and longer-term goals, to ensure the UK meets its obligations under the UN Convention on the Rights of Persons with Disabilities? See https://www.disabilityrightsuk.org/news/2017/january/disabled-people-tell-un-committee-uk-failing-international-rights-convention for the top issues where the UK must make progress

•    Do you support our rights to independent living, accessible transport, education, employment and public life?

•    Will you work to ensure our rights are protected and developed post Brexit?

 2. Will you change the way the benefits system works for disabled people?

•    Are you committed to replacing the Work Capability Assessment and sanctions regime for disabled people claiming benefits?

•    Are you committed to no further benefit cuts affecting disabled people in the next Parliament?

 3. Are you committed to a health and social care system that enables disabled people to lead full, independent lives?

•    Will you work to stop the rise in compulsory detention and forced treatment of people with mental health issues or learning disabilities?

•    Will you work to phase out restraint and seclusion?

•    Will you work for a social care funding solution that offers all disabled people more choice and control in our lives?

•    What are you going to do about the amount we have to pay in social care charges?
https://www.disabilityrightsuk.org/news/2017/may/three-questions-ask-your-parliamentary-candidates


And of course extra support must go to those disabled people who choose to stand as candidates despite the extra barriers of all kinds they face in contributing in this way.

It’s not easy to see a positive way ahead at present but it’s still important to use your vote!
Clare Evans MBE



This is the first of regular short blogs (450 words ish) on topical issues relevant to us as disabled people.

28 March 2017

25 years of user involvement- how much has it changed things?

In November 2016, Wiltshire and Swindon Users Network reached its 25th anniversary. 


It was the first user involvement group locally, and became the leading democratically elected generic users’ network at the time, formed in response to the 1991 NHS and Community Care Act.  This Act recognised, for the first time enshrined in legislation, the value of involving users and carers in the planning of Community Care. It grew to be a network of several hundred disabled people of differing perspectives, conditions and experiences, willing to give their views to improve services.  This continues to exist countywide today.

Of course, there had been organisations of disabled people emerging in other places from the new social movement for some years but such specific ‘user involvement’ networks were particularly targeted at long term users of health and social care. As such it attracted much interest from policy makers and researchers- the requests for conference speaking and exemplar book chapters seemed endless and we hosted seminars called the ‘Wiltshire Experience’ for fellow groups of users across the country inviting a single professional locally to add their experience! Has the model had a lasting effect on the landscape of community care?


From the start it was about developing the ‘art of the possible’ techniques without compromising our position, to bring about change to better meet users’ needs. We developed three catch phrases to describe the techniques we found to be most effective.
‘From Bobble Hats to Red Jackets’ described the journey we, as service users, needed to go on to recognise ourselves changing from ignorant outsiders (in tatty bobble hats) to empowered participants with valuable expertise and the red jacketed uniform of professionals. The red jackets my colleague and I wore for the official launch of Community Care in April 1993 gave voice to this feeling of personal empowerment and acceptance by professionals. The change in their attitude as they learned to treat us as equal voices was noticeable.


‘Riddling the system’ was a powerful way of describing our technique of negotiating to have service users’ voices heard at all levels of planning service delivery and strategy. Tentative, usually new to the network, user voices concerned with an initiative would meet safely together in a group of their own with a facilitator and all costs paid to explore their needs. Their collated comments would be taken to a more strategic planning level by user representatives and we also expected to work with elected members to explain the issues for users. In this way everyone was informed of the issues for users and users felt their views had been taken forward in a democratic way to bring the change they needed. I once calculated the Network was involved in giving their views in social care in 64 different ways! This phrase became so well known that one of our principal allies, the Director of Social Service, Dr Ray Jones, reported that he felt ‘well and truly riddled’!


Finally it became obvious that ‘working with allies’ in the system was the most effective way of bringing about change. ‘Allies’ were individuals at all levels of the system who understood the need for users’ views to be heard if services were to become user-led. Their understanding and willingness to go the ‘extra mile’ to ensure users’ views were brought to decision makers’ attention was crucial to our voices being taken seriously.


So, did anything change? It was of course much more difficult than we had imagined- we were after all trying to change a culture of “professional knows best”. Short term however, there were successes, which affected some people’s experience of services. For example, professionals spoke of having “light bulb” moments; we co-produced “Wilf”, the 3rd party cash payment scheme set up in 1993 before direct payments became legal; and voicing older people’s need for a nail cutting service for months eventually led to the setting up of a scheme which overcame health and safety objections.

Is it indulgent to think that service users’ voices are now seen as part of the community care landscape? – The effects of austerity and attitudes to marginalised citizens mean we must always be on our guard.

Clare Evans MBE was the first Director of Wiltshire and Swindon Users network 1991- 1997

SCIE - Co-production – the Wiltshire perspective

15 March 2017

DNR- Professional Judgement, Unconscious ‘Otherness’ or a Case of Safeguarding

 An edited version of this article appeared in Community Care in 2016. There is an irony in the follow up treatment I receive in my visits to the consultant every few months. He remains amazingly friendly and impressed by my physical response to his treatment of the mask. Last time he referred in a meaningful way to a conversation “you and I had in the resuscitation room” and how good it was to see me so well and still able to work. (who else than disabled people are praised for working at 70!) Is an ironic smile appropriate!?

DNR- Professional Judgement, Unconscious ‘Otherness’ or a Case of Safeguarding

An ex social worker/ service user examines the issues

When adult safeguarding issues became a hot topic ten years ago and identifying the issues became the subject of the day, I didn’t feel it had a lot to do with me as an articulate, middle class user employing my own PAs. Indeed, I remember being asked to speak at one or two conferences to put the alternative view and I was pleased to stress the importance of not being prevented from taking risks. However, an occurrence a few months ago has made me think again on this subject.

I was rushed to A and E one Sunday morning with breathing problems and was diagnosed with pneumonia so was pleased to have the specialist’s help. As I wasmade to feel comfortable and came to, with a mask for breathing, (looking weak and helpless with joints riddled with arthritis) the consultant who’d assisted me, came to speak to me. He explained the diagnosis and treatment and then went on to describe how I could sign the form for Do Not Resuscitate (DNR) so that it was on my file.

Then everyone would know in the future that I did not want the struggle of being revived if the situation occurred again. I try to be obliging as a person and of course look up to doctors as we’ve all been trained to do so I agreed to it without thinking.

Half an hour later my husband was shown in to see me and I explained what had happened. He was rather shocked and said I shouldn’t agree unless I really wanted to and I began to see I hadn’t fully realised the implications of what the consultant had suggested. Then I was admitted for a couple of days and nothing more was said to me but it was impossible not to hear another consultant suggest the same course of action to two other people on their own with him behind ward curtains without their families.

It wasn’t until I was discharged home with the letter for the GP that I realised it was marked that DNR should be the course of action and so I had to be proactive if I wanted it changed. Fortunately my GP had some specialism in advising older people about this and so after a full discussion by phone he was able to cancel the instruction and change the paperwork.

I subsequently had excellent follow up treatment from hospital with a mask fitted to prevent the likelihood of further crises and regular visits to a specialist clinic to check on its effectiveness. The consultant couldn’t have been more positive about seeing both my husband and myself, valuing my still working part time and looking to the future and how worthwhile the treatment is. The DNR form has not been mentioned. So what does this experience show me?  I lay there as a grey haired, 70 year old disabled person, fitted with a mask, vulnerable and in an alien environment. Did the consultant see me, unconsciously, as in ‘another group’ he didn’t identify with so he followed professional protocol to the letter without thinking beyond what he could see in front of him? Was it only when I was back to normal and we could interact as people, did he appear to see me as a useful and valued member of society with implications for my being kept alive?

A few months later I wondered what to share about this experience, if any. I raised it at the user group run by the Users Network, linking to the council Safeguarding Board and chaired by the board chairman. I was pleased to find a shared understanding of the issue and it led to the group informing themselves of the required protocols by having a hospital speaker at their next meeting and the chair raising the issue at the Safeguarding Board.

How many others have found themselves in such vulnerable situations without family with them and a full understanding of the issues? How much are the pressures of costs of hospital beds leading to such safeguarding issues? What extra protocols need developing to prevent unconscious stereotyping we are all guilty of?

Clare Evans MBE