Gold Medals, the Paralympics and Apprenticeships

I was fortunate to go to both the Olympics and Paralympics, and given their amazing success, I've been wondering what impact they might have on Hertfordshire PASS. What encouraged me greatly was that Gold Medals are Gold Medals whether Olympic, or Paralympic. In the work that we do / aspire to do, 'achieving an apprenticeship' is comparable to winning the Gold Medal, however at present only the able bodied can 'win'. Given what we've seen and marvelled at in both the Olympics and Paralympics, why can't there be two different routes to the same Gold Medal end - applied to 'achieving an apprenticeship'?

(The above represents the personal views of Nigel Fenner following discussions with Margaret Martin who is currently engaged in independently evaluating Hertfordshire PASS's pilot 'apprenticeship' in being an employer of PAs / carers. These views are not necessarily those of Hertfordshire PASS.)

Margaret's response:
Thanks Nigel, that was an interesting discussion in the light of our visits to the Paralympics and watching Arthur (Hertfordshire PASS Trustee) do the torch relay. The other correlation with the Paralympics is that the route to the same medals is not an inferior or lesser route, it’s a different one. In fact you could argue that it’s a tougher one in many respects for those involved and for those who support them. There is an important parallel with the current deliberations about the apprenticeship framework for disabled people in employing their own care staff. Some in policy and tertiary education suggest that it is best to go down the “exceptions” route within the current apprenticeships programme. I think that this would be similar to saying that Paralympians are unable to follow the Olympian “route” so had to be given their own route on this basis. No, it is different, and should be recognised as a route in its own right – otherwise the status of disabled people who want to employ their own care staff in the apprenticeship programme would be as “exceptions to the rule”.
I know these are tricky negotiations, and a way forward needs to be found even if it means compromise and flexibility on both sides. It does feel to me that there is a principle at the bottom of this debate which we should not shy away from. As Hanna said at the National Steering Group meeting in August, “as soon as you put the word disabled in front of somebody everything becomes ten times harder!” It’s a good time to raise this whilst the Paralympics are fresh in people’s minds. The word “para” in Paralympics means “alongside” (Greek) – maybe that’s an indication of what is being sought by Hertfordshire PASS in the apprenticeship programme.
(As with Nigel’s Blog, these are my thoughts and not necessarily those of Hertfordshire PASS. Margaret.)

What a Personal Assistant (PA) wants from their employer - on their first day

We're 6 months into piloting our new apprenticeship in 'being an employer of PAs'  with 3 young disabled people working with 3 apprentice PAs. This has given us opportunity for the 'employers' to experience working with different PAs. Over the last 6 weeks or so, we've been working up to such a change, by following the processes and procedures required in finding and appointing a PA, culminating in a 'first day' working together.

At the end of this 'first day' recently I asked everyone to recall what they had covered over the previous 6 weeks, and this is what they shared:

• The importance of honesty, confidentiality, responsibility, and independence
• The need to separate the personal from the professional
• To reflect on and use experiences
• The importance and use of a Job Description, and Person Specification
• The use of an application form
• The management of interviews, references, and the contract of employment, and
• Considerations early on such as income tax, induction, and the 'first day'.

Having compiled this list I then asked 'what do they think is the most important consideration for the first day of employment of a PA?'.

Almost immediately one of the PAs said "honesty", then another said "independence….because when I work for someone I want to know what they can do, and the things they can't".

Whilst we've always focused on the relevance of independence (and not just the apprenticeships as 'ends in themselves'), I was astonished at this comment, given I had expected other more practical issues to be raised as requiring consideration on a 'first day'.

In reflecting on all of this I recall a friend, and mentor who spent many years as a Prison Governor, say to me "you only become truly independent, when you know and name your dependencies". In other words there is no shame in all of us being honest about the things we need help with, because it's only through doing this that we become clearer about those things we can do for ourselves.

And for a young 17 year old apprentice PA, this is what she would want to explore with you on her 'first day' of work for you.

Hertfordshire PASS's integrated approach to enabling disabled people to become more independent - and parochial government departments.

(This blog represents the views of Nigel Fenner and not necessarily those of Hertfordshire PASS.)

This last week I was considering making an approach to a government department given they have been advertising the availability of funding. By way of preparation I asked one of our senior staff what progress he had made a number of months ago when he invited the government minister responsible for the department to visit us. He told me he had received a letter suggesting we try a different government department given it was more relevant to PASS's work.

This last week I was also writing a funding application where one question asked 'what demand and need is there for the organisation's objectives?' and I wrote the following:

"Hertfordshire PASS’s key objective or aim is to enable disabled people to be more independent. We use employment (through our WorkABILITY programme), and ‘being an employer of care staff’ (through our EmployerABILITY programme) as the means by which this is achieved. The demand for WorkABILITY grows out of the exceptionally high levels of unemployment amongst disabled people (50%) compared with the non-disabled population (20%), linked also to recent Welfare and Benefit reforms where there is increasing pressure on disabled people to secure employment. As a result disabled people need our services all the more.

The demand for PASS’s ‘being an employer of care staff’ work, we call EmployerABILITY, grows out of many disabled people wanting to remain in their own homes rather than being taken into Local Authority or private care. Given the cuts in public spending there is extra pressure on disabled people to ‘go it alone’, but without this being adequately resourced ( - as highlighted by a recent National Audit Office report ‘Oversight of user choice and provider competition in care markets’ published 15 September 2011).

One of the benefits of operating the EmployerABILITY programme, which prepares disabled people to be better employers of their care staff, is that it makes them significantly more employable, which links directly to PASS’s WorkABILITY programme. Not only is such a (unique?) ‘one stop shop’ creating a demand in local disabled people, it is also generating interest from a political point of view both locally and nationally.

There is also demand for our apprenticeship programme because PASS is the only organisation in the UK providing a specialist service for young disabled people, delivered by young disabled people – so the National Apprenticeship Service inform us.

Lastly we feel there is demand for what we do because it is user-driven. Where users decide on what is to be provided, and how, and deliver it, it will, by definition meet the needs of their peers. (PASS has published 5 books / papers on its user-driven work – available on request.)"

I had  thought to write a bit more about the demand and need for our work in this funding application, but I was worried the charity we were applying for funds to, might lose sight of what PASS does, a bit like the government department that encouraged us to go elsewhere.

We believe it is one of PASS's strengths that to enable disabled people to become more independent we use programmes in employment, and 'being an employer of care staff', not just separately, but together sometimes. In addition we try very hard to be user-driven. Unfortunately such an integrated approach may well be a weakness in terms of raising the profile of our work with the relevant (and quite separate) government departments, at local and national levels. For example

• employment is the responsibility of the Department of Work and Pensions, and in relation to apprenticeships the responsility of the Department of Further Education, Lifelong Learning and Skills,
• 'being an employer of care staff' is the responsibility of Social Services (now called Health and Social Care), and
• PASS's user-driven work, the responsibility of the Department for Disability Issues.

So perhaps it is no surprise one of the above departments referred us on to one of the others when we wrote to the Minister responsible, but it is nevertheless disappointing.

I don't think we'll change the way we work though. As Ernest Becker ( - the Pulitzer Prize winner) wrote we live "in an era of hyperspecialization (where) we have lost the expectation of.....delight.....(where) thought (and insights) span several fields of knowledge".

We hope heads of government departments might come and share in our delight. We'll see.

Hertfordshire PASS's AGM and the integrity of its user-driven work

(The following represents the views of Nigel Fenner, and not necessarily those of Hertfordshire PASS.)

I feel we had an excellent Annual General Meeting (AGM) last Friday which included the active participation of Stephen McPartland, our local MP, and Carol Latif, the Mayoress of Stevenage.

We try hard to be a 'user-driven charity….' so most of the AGM presentations were delivered by two trustees and 7 staff regarding the work they 'drive'.  As our local MP remarked, in responding to all these presentations….."with Hertfordshire PASS, you get what it says on the tin".

But what is 'user-driven' when you open this tin? Is it just about disabled people employed by Hertfordshire PASS leading the organisation's projects, or is it much more than this?  To answer this question, let me share two recent experiences I've had over the last 10 days…..

Firstly one of our senior staff ( - who recently finished his apprenticeship with PASS) was in, what we call the 'hot seat', where he was asked questions about the experience of being an apprentice by new apprentices and staff.  Here is part of the dialogue which took place:
Question: What do you  feel are the greatest differences or similarities for you between school and the apprenticeship you did here at PASS?
Answer: ( - which was immediate) I was bullied at school  - which made me stronger.
Response by one of the new apprentices: Stronger - you're kidding!!?
Answer: I don't regret having been bullied…..Of course it was something I hated….it was a living hell….but I see now that it has made me stronger…...
Question: What might Hertfordshire PASS do through its apprenticeship programme  - to make our apprentices stronger?
Answer: It's clear to me that because Hertfordshire PASS is user-driven I have been put under different challenges which have had the same effect of making me stronger.
(This quote / dialogue has been used with permission.)

The other experience relates to a comment made by one of PASS's existing apprentices during a discussion on 'what our 'starting point' was on our journey to independence?' The staff member said 'if I had not had so many tantrums when I was younger I would not have been sent to (name of residential home) by my mum…...which forced me to be independent…... If this had not happened I don’t think I would be where I am now…..in leading on the work I do for PASS'.  (This quote has also been used with permission.)

What I feel these comments tell me about user-driven work is that it is not enough just to put our staff into positions of responsibility in 'user-driving' PASS's work, as there also needs to be opportunity for all of us to explore and understand what experiences we've had in the past, that 'drive' us now as individuals. This is about the integrity of PASS's user-driven work.

In psychology going on this personal journey is called individuation. As far as PASS is concerned we call it independent living, and refer to it in our AIM statement: To be a user-driven charity using employment and 'being an employer of care staff / PAs' to enable disabled people to live independently - which is 'what it says on the tin'.

Foolishness, disability and the UK becoming more competitive in a global market.

(This blog represents the personal views of Nigel Fenner, and not those of Hertfordshire PASS.)

The current economic uncertainty here and in Europe, and what the UK might do to 'grow its economy' enough to be able to pay off its debts is a key challenge at the moment. I get a sense many people feel that a return for the UK to manufacturing (beyond our reliance on 'banking and finance') is considered key - following the trend set by Germany over the last few decades. From reading the papers and watching the news on TV, I understand we're good at high-tech manufacturing ( - like Formula 1 racing cars), and also innovation in 'bio-technology', and computing.

So what do we need to do to enhance such 'high-tech-ness' and innovation? Steve Jobs (Founder etc of Apple) talked about 'staying hungry, and staying foolish' which I heard on Radio 4's Today Programme, the day he died - on the 6th October. This might have passed me by except that later in the programme there was a feature on a new play opening at Hampton Court Palace entitled 'All the King's Fools' exploring the relationship between Henry VIII and his court jesters, or fools, whose role "was not only to entertain the king but to bring him truth, (given) the fools were thought to be conduits to the divine - able to channel the word of God to the monarch" (BBC News online). According to Dr Lipscomb (Lecturer in Early Modern History at the University of East Anglia) the "natural fools" in the king's court "might well equate to somebody with learning difficulties or learning disabilities today".

So, are there any 'natural fools' that Steve Jobs might have referred to, to exemplify what he meant? He might have mentioned Bill Gates of Microsoft who is autistic, or Albert Einstein with Aspergers Syndrome, or Alexander Graham Bell, the inventor of the telephone, who had a learning disability, as did Thomas Edison who invented the electric light bulb. In addition both Henry Ford, and Leonardo da Vinci had dyslexia.

(Look also at a blog I wrote in 2009 entitled 'Boppi's song and Darwin's survial of the fittest': http://nigelfenner.blogspot.com/2009/09/boppis-song-and-darwins-survival-of.html )

Today though in our society, it strikes me that having a disability is by definition viewed negatively, so that there is little opportunity for disabled people to develop any capacity to be 'conduits to the divine', and / or become the next generation of innovators needed at this time in the UK.

I hope though at Hertfordshire PASS we give people with a 'learning or physical challenge' ( - the term that the PASS staff who are disabled prefer to call themselves) opportunity to innovate. This comes from being user-driven so that now we have staff in place who lead on pioneering innovative solutions promoting independence for their (disabled) peers. Such innovations we can boast include an apprenticeship programme resulting in Hertfordshire PASS being one of only two charities listed in the Top 100 Apprentice Employers in the UK for 2011 by City & Guilds, and the National Apprenticeship Service. We're also pioneering the first ever (so we are told) apprenticeship in 'being an employer of personal assistant(s) / carer(s)' so enabling (disabled) people to live independently, rather than being taken into care by the local authority.

I'm not saying that what we're doing can solve the UK's current economic woes, but with economists and politicians 'scratching their heads' regarding what should be done, we do feel we have something to offer.

The health impact of employing your own personal assistant / carer

Hertfordshire PASS was considering applying for a health impact award with Glaxo Smith Kline, so instigated a study on its 98 Direct Payments users who employ their own personal assistant(s) / carer(s). Whilst we decided not to apply, we feel the need to publish some important results. What follows therefore is the report we prepared - subsequently sent to all 98 users.

INTRODUCTION.
Hertfordshire PASS aims to be a user-driven charity using employment, and ‘being an employer of care staff’ (- through the use of Direct Payments) to enable disabled people to live independently.

In addition to enabling people to live independently, Hertfordshire PASS believes its work may have an impact on the health of the people it provides a service for.

As a result a questionnaire was prepared (appendix 1) and sent to the 98 Direct Payment users (ie ‘employers of care staff’) who access PASS’s Hertfordshire PASS’s Payroll and Support Service.

RESULTS.
Response rate
Of the 98 who received ‘the impact on your health of employing your carer(s)’ questionnaire, 35 were returned to PASS – a response rate of 36%. Of these, 2 questionnaires were sent back blank.

Changes to health – comparing average scores
The average score for health before employing a carer for the 33 Direct Payment users was 4.0 (on a 0 to 10 scale) - equivalent to Poor to Average health, and 6.0 after employing a carer - equivalent to Average to Good. A paired t-test shows this is not a significant difference statistically, however, many of the comments listed below demonstrate how important employing one’s own carer is for health. (We would need a bigger sample than 33 to prove 'employing your own PA / carer improved health'.)

Reasons given as to why employing a carer has an impact on health.

A respondent....

....who rated their health as good, then very good, once they employed a carer reported: “I’m more confident with help can do much more. Not so much at risk when having seizures as the carers take care of me.”

....who needed help with bathing, cleaning and shopping, who went from ‘very poor’ health to‘average’ health reported: “I can get out and about”.

....with multiple health problems went from ‘very poor’ to ‘average' reported: “there is less stress”.

....with multiple health problems went from ‘very poor’ to ‘poor’ and reported “better diet management, significantly increased independence and management of conditions and its symptoms”.

....with depression who was housebound who reported poor health before having a carer, and good health after reported “I feel in control again”.

....who because they were “always falling, so cannot go anywhere” had poor health, then very good health once they had a carer reported: (I now have a) “balanced lifestyle, enjoying activities”. (Has having a balanced lifestyle, reduced the falling?)

....who reported her health as poor because “I went without meals. Had no motivation to struggle to get dressed. Saw no one from one day to the next. Forgot my medication. Couldn’t keep my house clean. Just very very depressed”. Once employing their own care staff, their health improved to very good because “I feel looked after, depression has gone. I eat regular, healthy meals. I love going to my “day care” too and having a carer get me up and motivated for the day. Its made me very happy.”

....whose health went from average to good and included the comment: “my health has improved now as all the carers I employ look after me very well”.

....with angina etc whose health moved from poor to ‘average to good’ reported: “I feel more secure that I have someone in every day to help me.”

....slowly losing her mobility, whose health went from average to good reported: “maintained my cleanliness..” once she employed her own carer.

....reported very poor health because of a brain haemorrhage and stroke when 3 months pregnant, and very good health after employing a carer because “the help I receive has enabled me to concentrate on improving both mentally and physically…to help looking after my son. I couldn’t manage without the help I receive”.

....who reported speech problems and confusion if they go to places they don’t know, and average health, reported good health after they employed their carer whilst adding: “I now have bit more confidence in myself also my speech is getting there; still a long way to go. Still need someone with me when I go out”.

....who was “not able to get out of bed or wash or dress” went from very poor, to average health given their carer gave “help with daily tasks. Has made a great impact so less stress”.

....with multiple health issues moved from very poor, to average health because employing their own care staff meant they were “not so tired all the time, help cooking, shopping, cleaning, child care, more time to rest and pain not so bad 27/7 with ability to rest”.

....with progressive Multiple Sclerosis reported average health both before and after employing a carer however they reported “my general health is good but obviously my disability has increased so my carer is indispensible”.

....rated their health as average because “more stressful trying to keep up with everything (as well as being) quite dependent on my husband for help”. After employing a carer they reported their health as very good and “more independent and therefore stress levels have diminished both for me and my husband”.

LINKS TO THE ACADEMIC RESEARCH.
The above findings tally with the academic research, for example that reported by a Social Care Institute for Excellence report (briefing 20) entitled ‘The implementation of individual budget schemes in adult social care’ published 2007, and updated 2009 which states: “positive outcomes for satisfaction, quality of life, social integration and health have been reported by older people, physically disabled people, people with mental health problems and people with learning disabilities who use a personal assistant they have chosen” (and provides 4 references to substantiate these claims).

CONCLUSIONS - AND WHAT NEXT?
Hertfordshire PASS’s service clearly has an impact.
The findings from the questionnaires demonstrate that Hertfordshire PASS provides an invaluable service to disabled people, in enabling them to be more effective employers of their care staff which in turn clearly has a positive impact on the health of some very vulnerable people.

Offering PASS’s service to other Direct Payment users.
In Hertfordshire PASS’s experience, there has been an increasing trend for many Direct Payment users to move to cheaper payroll providers which do not provide the additional telephone support provided for 2 days every week by Hertfordshire PASS. It is therefore hoped, for the more vulnerable disabled people, that they be signposted to Hertfordshire PASS’s excellent service – which includes plans for its telephone support to be extended by early 2012 for a further 2 days / week, staffed by disabled people, for disabled people.

THANKS
Finally thank you to all Hertfordshire PASS's Direct Payment users who participated in the survey, to Sylvia Bishop for the excellent service she provides them, and to Karl Hunt and Sharon Willing who processed the data.

Nigel Fenner (Manager – Hertfordshire PASS)
13th September 2011

Appendix 1
Hertfordshire PASS
The impact on your health of employing your carer(s) - QUESTIONNAIRE.

Hertfordshire PASS ( - who manages your payroll) wants to find out what the impact of you employing your care staff has had on your health, so would be very grateful if
you would answer a few questions on this.
1. Before employing care staff or Personal Assistants my health, in
general, was….(circle one answer, please)

Very poor

Poor

Average

Good

Very Good

Can you describe what health issues you had before employing care staff?


2. Since I started employing care staff or Personal Assistants my health, in
general, has been

Very poor

Poor

Average

Good

Very Good

Can you describe what changes (if any) to your health have taken place since you
started to employ care staff?


Thank you. We will circulate the answers to the above questions to all Hertfordshire PASS’s Payroll clients in September.

Nigel Fenner (Manager Hertfordshire PASS).

Please return this questionnaire to Hertfordshire PASS using the enclosed stamped addressed envelope provided – by the end of August. Thanks.

The use of art for Co-production ( - in bringing users together with providers and commissioners on a 'level playing field')

(The following represents Nigel Fenner's personal views rather than those of Hertfordshire PASS.)

As part of Hertfordshire PASS’s involvement in the planning of a User Led Organisations (ULO) Conference in Hertfordshire, it was invited to prepare and lead the Art Workshop, given its experience of running similar with young disabled people through its Job Forum.

Having delivered the workshop I wrote the following report for members of the planning group, which is reproduced her – without the photos of the artwork, and names - to protect the identity of individuals. The report summarises what took place, and finishes with some reflections relevant to the overall aim of the conference: users taking control of their services in Hertfordshire.

2. What each conference delegate was expected to do.
After lunch the 100 or so delegates were split into groups of 10 made up of a random mixture of ‘users’, carers, providers, commissioners etc. Each group of 10 worked at a table with a range of arts and crafts materials, supported by a facilitator - mostly from Adult Care Services, briefed before the conference by Nigel Fenner using a briefing sheet (Appendix 1).
The Support Co-ordinator Senior Apprentice at Hertfordshire PASS introduced the Workshop by setting the following brief:
“Everyone is asked to pick the best or worst example of a service you know of which is led by a user or users, where for example users ‘have a say in what happens’ – and then use the arts and craft materials on your table to communicate this.”

3. Nigel Fenner’s experience of facilitating his group
As soon as the group started it was noticeable how all the ‘non-users’ worked with the ‘users’ to help them follow the brief, at which point, as the facilitator, I reminded everyone that we were ALL asked to work to the brief. This resulted in the manager sitting next to me declaring that ‘this was taking her outside her comfort zone’.
After about 30 minutes, when everyone had finished their art work I asked them:
“to reflect on the art work we have all created, and using only a few words or phrases, each describe what is important in terms of ‘users taking control of their services’ in Hertfordshire”.
In response each member of the group shared their art work and said the following ‘words or phrases’ ( - the numbering below being used in this report as a link to photographs of their artwork in appendix 2 - not reproduced in this blog):
1. “We have healthy lunches which we help to choose” (said by a user – as their best example)
2. “I lost my purse when on my way to the gym” (user – worst example)
3. “This shows me (pointing to his clay model) on the recruitment panel at the Daycentre. I ask them if they are good….if they will support us very well….. I get paid for this role” (user – best example)
4. “I went to a residential centre to lead a ‘pampering session’ but the residents were all sat in front of the TV” (provider – worst example)
5. “We discuss what we do for activities and my picture shows the Holiday Inn, Michael Jackson, using a spa….” (provider – best example)
6. “Public transport….; the drivers are rude and sometimes bully disabled people” (provider – worst example)
7. “The Sunnyside Trust…..” (provider – best example)
8. “The Learning Disability Parliament in Barnet is user-led” (provider – best example)
9. “Stop and listen” (provider – best example)
10. “’Mirror, mirror….’ kept in the pocket to check whether what we’re doing is user-driven”(Statutory sector manager)
11. “We need the tools for power…..to help us” (Statutory sector manager)
12. “A disabled person saying the truth in a group discussion, when no one else had the courage to do so” (provider – best example).

As facilitator I asked what all our art work, taken as a whole, was saying in terms of ‘users taking control of their services in Hertfordshire’, and together we spread the pictures across our table, in an order which told a composite story, which went something like:
“We get sat in front of the TV (4).... get our purses stolen by bad people (2)....and the buses are inaccessible and sometimes the drivers bully us because of our disability (6)...What is needed is for people to ‘stop and listen’ (9), and ‘look’ (using the mirror) (10), and appreciate that disabled people have wise things to offer (12)...so we can use the ‘tools and power to help us’ (11)....so we can choose our own healthy lunches (1), decide where to go on our outings (5), be involved (7), be on interview panels to select staff (3) and be part of the LD Parliament (8).”

Given this was too much to feed back in the plenary, the group was asked to
“decide as a group what is the most important word or phrase that will have the most impact on ‘users taking control of their services’ in Hertfordshire.
Also agree on who in the group will share this in the Plenary session.”
The group decided on ‘Stop and Listen’ (9) as the most important phrase, with a user from the group feeding this back in the plenary session.

4. Plenary feedback from all groups( - as noted down by Nigel Fenner)
 ‘Stop and Listen to me to support me better’
 ‘Getting into my own flat; choice and control; working together is necessary’
 ‘Important to have 50 – 60% of users on the management committee to have a voice’
 ‘A Parliament; Direct Payments are important; awareness’
 ‘Working together with confidence and honesty…to include everyone’
 ‘Being heard…; support and understanding’
 ‘Change for the better’
 ‘Time; the clock….care and the clock; our picture shows a disabled person left in their hoist because the carer’s shift had ended’
 ‘There’s a lot of crap in our ‘life tunnel’, but once we got a PA our lives got brighter’
 ‘Power, listening, trust, obstacles….; users need to be listened to and empowered…’
(The written notes taken and recorded by each facilitator on their briefing sheet are listed as Appendix 3.)

5. Post conference reflections – to the Art Workshop, and the conference in general
5.1 Feedback from the facilitators
Nigel Fenner wrote to all the facilitators asking them for their post conference reflections and received 2 responses, one from an Adult Care Services (ACS) Manager, and the other from a Senior Apprentice at Hertfordshire PASS. The questions asked and their full replies may be found as Appendix 4 – reproduced with permission.
One suspects that their reflections represent the two extremes of views held by participants on the Workshop: The Apprentice reading much more into the art (ie assisted suicide) than the ACS Manager and her group who found the ‘brief confusing’.
Nevertheless the ACS Manager’s group produced an excellent piece of art on ‘time and time for change’ – see below.

5.2 Nigel Fenner’s reflections.
In planning the Art Workshop, facilitating a group, reviewing all the art work in depth with another Hertfordshire PASS Senior Apprentice, and getting feedback from facilitators (see above), the following personal reflections are made by Nigel Fenner:

a. The art workshop produced some important and creative insights
 The use of TV in residential or day care settings as the worst example of a user-led service (picture 4 in appendix 2). In another group someone had drawn a TV and next to it written ‘free from TV’.
 How the use of long words by professionals exclude many users. For example one picture included the words: ‘When the ULO do there workshop the peop who read the ULOs they make to many long words’. In addition a member of the planning group (for the ULO conference - presumably) also reported in their ‘art workshop group’, they found it difficult to take part.
 Some images told some sad stories:
- someone in a wheelchair being struck by lightning and being told ‘you can’t do that’…and falling into a shark infested sea
- a mass of wool stuck on the page and ‘aarghhhhh!’, and ‘tied up in knots!! cannot escape’ written beside it, also with a list of these words: ‘confusing, frustrating, emotional, upsetting, angry, bitter, restricting’, and
- a life size piece of ‘crap’ coming out of one end of the ‘life tunnel’ piece of art work created by one group.
 The importance of time as portrayed by one group, given their only art work was a very large sheet covered in clock faces, surrounding the central image of a disabled person suspended in a hoist above their bed and left by their carer, who had ‘clocked off’ ( - already referred to above).
This links to the discussions we regularly have at Hertfordshire PASS about the use and management of time given we believe ‘time is one thing that disabled people can begin to manage, compared with many other aspects of life’.
 The mirror (10 in Appendix 2) which because of its association with the Fairy Tale ‘Snow White’ (whether meant or not) raises all sorts of questions such as ‘who is the fairest of them all?’.....in terms of ‘Users taking control of their services in Hertfordshire.’

b. The ULO conference felt like ‘co-production in action’
Given the conference gave significant space and opportunity for users to
 lead ( - through AB introducing the conference),
 share ( - through the 4 stories delivered at the start of the conference by a range of different users regarding a range of different interpretations of what user-led means in practice), and
 work together ‘on a level playing field’ with commissioners and providers ( - through the art workshop) – see c below,
that the ULO conference felt like ‘co-production’ in action.

c. The importance of meeting users in a place they find ‘comfortable’...and that they understand.
Once during the conference and then immediately afterwards I was told separately by 2 senior managers ‘the art work session took me right outside my comfort zone’ which led to us discussing how important it is for commissioners and providers to perhaps experience such discomfort, if co-production is to work. This is set in the context of the discomfort that users probably experience when they attend our meetings and conferences – as communicated through a number of pieces of art.
Getting it right is not easy though, as the experience with the conference evaluation form demonstrated. Whilst the form was very ‘easy-read’ no one on our table filled it out because it was not possible to relate the symbols to the sessions in the conference.

d. ‘User-led’ operates at both individual and corporate levels
It may be stating the obvious but the art workshop and conference in general enabled me to better understand that ‘user-led-ness’ is as much about developing individual authority in users (in choosing menus, or activities, or whether to watch TV, or managing their own time), as in creating User Led Organisations (ULOs) – and that these are not mutually exclusive.
Therefore the challenge involves knowing how and when to move users who, having developed such individual authority, are ready and willing to develop a more ‘corporate authority’ in enhancing the ULO they are part of, or if necessary, creating a new one.
From answers to one of the ‘quiz-dom’ questions ( - the session which followed the Art Workshop), it would appear as though a significant number of disabled people are willing – see below.

e. A significant number of users want to develop their capacity to lead
I was astonished that 38 users expressed a wish to get involved in developing their leadership, with only 14 saying no in response to the ‘quiz-dom’ question. This was a question posed by KF (Hertfordshire PASS) who has attended the Leading Ability course run by the Essex Coalition of Disabled People as commissioned by the Department of Health earlier in 2010.

f. Disabled people’s stories are so important
I was very impressed with Mrs B’s story about her experience of Direct Payments, so much so that I asked her if we might publish it on Hertfordshire PASS’s website – to be featured on Hertfordshire PASS’s new ‘PASS experience’ page.


Appendix 1
User-led Organisation (ULO) Conference
16th September 2010
Art Workshop – FACILITATOR’s briefing sheet

Facilitator’s name: …………………………………………………………………………………………………………………

Thank you for agreeing to facilitate this Art Workshop session. There is no right or wrong way of facilitating the session however all facilitators need to account for
 the BRIEF given to each group,
 the OUTPUT we expect from each group,
 how the session will link to the PLENARY session, and
 that we have to finish the session by 3pm.
The BRIEF for each group
Each table of 10 or so people have the following brief to work to:
“Everyone is asked to pick the best or worst example of a service you know of which is led by a user or users, where for example users ‘have a say in what happens’ – and then use the arts and craft materials on your table to communicate this.”
The OUTPUT we want from each group
Towards the end of the session please ensure there is time to get your group “to reflect on the art work we have all created, and using only a few words or phrases, each describe what is important in terms of ‘users taking control of their services’ in Hertfordshire”.
Please list these words or phrases below ( - continue over page, if needed):

The link with the PLENARY session
Once everyone has shared their ‘words and phrases’ decide as a group what is the most important word or phrase that will have the most impact on ‘users taking control of their services’ in Hertfordshire.
Also agree on who in the group will share this in the Plenary session.
It should now be 3pm.
What to do with your group’s art work – by the end of the day
Please deliver this ‘filled out’ sheet and your art work to the Hertfordshire PASS stall. If you can, it would be very helpful to note on the back of each piece of art whether it was created by a user, provider, commissioner, or ‘other’, as well as describing what the creation represents.
Thank you.
Hertfordshire PASS
15 September 2010

Appendix 2
Pictures - not reproduced here.

Appendix 3.
The feedback from each group as written up by the facilitators

SS’s group
1. Empowerment. Enlightened; changing belief in our capabilities; enhance our lives; finding what suits you best; incentive to go out; raising awareness, passion, LOCAL
2. Democratic. Best interest heard; restoration of your self esteem
3. Awareness

CB’s group
Meaningful inclusion; choice; move forward; together
(Facilitator not identified)
Bad: confusing, tied up knots, bitter, angry, frustrating, emotional, professionals using long words and not explaining them.
Good: Path of meeting different people and organisations; different places; good to be involved and help each other; smiling; meeting people.
Confused about long words
Larger font size – use organisations which are expert at making easy read and pay for it!
Really hard for people for LD to take part
Difficult to be part of the planning group.
Working together with confidence and honesty to have a strong voice and to include everyone. Being honest; kiss; making it easier to understand; going forward together; working together with people; good support; be included; building confidence; good support

CS’s group
Hard work; more choice; listened to; organisations that are user lead have more power; if you don’t trust your committee you won’t get anywhere; only someone who has experienced it can really understand; obstacles can get in the way of people; it is good to listen.
5 pieces of art: power, listening, trust, experience, obstacles.
Users need to be listened to, they need support and funding to be empowered.

HDT’s group
Finding out things you never knew you could do
Opportunity – confidence building
Support
Social friendships
People come up with ideas themselves
Responsibility
Knowledge – sharing – parts make a whole
Opportunities
Being heard + support + understanding.

Appendix 4
Facilitators reflections on the Art Workshop.

Email to all facilitators
Subject: Reflections on the Art Workshop at the ULO conference
To all facilitators
Thank you for facilitating the Art Workshop at the recent ULO conference.
I am writing a report and have used the ‘words and phrases’ you recorded on your briefing sheet as well as had a long look at all the art work – with AB.
I was hoping to have a section in the report on the facilitators reflections after the conference so can you please answer the following questions?
1. When you look back at the Art Workshop what ‘piece of art’ comes to mind first? Can you describe the piece…..?
2. Can you say what you feel the link might between this ‘piece of art’ and the aim of the ULO conference: ‘users taking control of their services in Hertfordshire’?
3. Any other reflections…?
4. Finally can you indicate whether I can use your answers to the above questions + what you wrote on the facilitators sheet, with your name, or without your name, or not at all?
Thanks.

Response 1 – used with permission
I think the piece that really stood out for me was Andrew’s tunnel of life that he and his table made as it symbolized the way how disabled people see life and I have heard these stories about disabled people wanting to end their life and I am on a campaign list to stop assisted suicide happening so the tunnel of life reminded me of the campaign.
I think the link with this piece of art reflects how disabled people are with their carers and the services that they get from having personal assistance with day to day tasks and the services that they provide to get personal assistants to help them.

Response 2a - used with permission
Hi Nigel
Answers to your questions:
1. None
2. I don't believe there was a link - my group struggled with the concept - they thought the brief was confusing (And was a topic of conversation for some time) and could not relate this to how they could control services in Herts.
3. Although a bit of fun (my view only) - it is hard to ask people to conceptualise in art what are often no more than feelings..e.g. frustration etc
I am not sure the brief was appropriate - reading the questions here I can relate them to the exercise - but this was not apparent on the day.
4. These answers are taken from the day itself - from the comments made to me during this exercise (Apart from q 3)
I hope this is helpful

Nigel Fenner’s response
All feedback is helpful – however be useful to know in what way the brief was confusing…..?
Did your table produce the large picture focusing on ‘time’? If so I’m really pleased, because the management of time is one area of disabled people’s lives that they can start to manage, as a start to growing to independence…. We often discuss the management of time in meetings at PASS….
I want to use your answers in your email in my report. As I asked in my email, can I quote you? Thanks

Response 2b – used with permission
yes it was the piece about time or time for change
The briefing as we understood it was to relate to a poor experience that was user led? We produced the piece we did to reflect 'time for change' - being about an experience that wasn't necessarily user led but the remendy to the problem was user-led -
The group felt they could only talk about poor experiences - we were then able to talk about what happenned and what the remedy was - in each case the remedy was SU/Carer taking control..which for me did answer the question (Which was why we created what we did) but the group felt it didn't though they were pleased with the outcome (I hope this makes sense)..which was the dilemma or confusion
I have no problem with you using the comments and the comments here which are entirely factual - in terms of that's exactly what was said on the day..
I hope this all makes sense nigel