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