Four lively workshops saw delegates debate healthcare, user groups, media and enterprise.
Doctor’s orders.
The right to treatment workshop heard from GPs and service users on how to make sure you get the best and most appropriate treatment ‘GPs will tell you what you need when it’s you who knows what you need,’ stated one delegate in the morning’s The right to treatment workshop. ‘I realise that ten-minute space means a lot of pressure, but it also means that sometimes GPs will not get the whole story.’
GPs could either be ‘helpers or fascist pigs’ said workshop chair Dr Chris Ford. ‘We’re like the rest of society. We’ve done a lot of education over the last 20 years, but there’s still an enormous amount to do.’
Delegates stressed the importance of getting the right – rather than ‘one size fits all’ – treatment, to which she replied that it was always ‘the person’ who should be deciding their treatment. ‘It’s about treating people as a person, rather than a drug.’‘It’s about having a dialogue, deciding on the best course of action, and going along with that,’ commented one delegate. ‘When I first went into treatment I thought I was involved in the decision-making, but it became apparent that I wasn’t as involved as I should have been,’ stated another. ‘Recovery has been pegged as a destination rather than a journey.’
Much of the terminology in treatment could also be derogatory, added Ford. ‘You’re defining people by one small part of their personality – why should they be defined by one element of themselves?’ SMMGP clinical lead Steve Brinksman, however, stressed that ‘when I say to people, “you’re hypertensive” or “you’re diabetic”, it’s shorthand. So if I say, “you’re a drug user”, sometimes there’s a difference between language being used judgementally and to define a particular meaning. In medicine it can sometimes get really complicated.’
‘As a nurse I worked with someone who had a glioma, but because he’s a drug user the GP said all his symptoms were down to that,’ said one participant. ‘You may be a drug user, but you’ve got a body as well.’ Time pressures could be a problem here, stressed another – ‘you only get about five minutes – you’re allowed one problem at a time’, while a third stated that there could sometimes be an attitude of ‘you’ve brought it on yourself’.
The situation had undoubtedly improved, however, said Francis Cook of the National User Network (NUN). ‘Things have changed, and we’ve come a long way – particularly in A&E. You now how have A&Es linked up to recovery communities. In the ’80s there was no universal drug treatment of any kind.’
Many medical professionals still had an aversion to being challenged, however. ‘Two weeks ago I saw my addiction psychiatrist,’ a delegate commented. ‘I went along armed with some information and was called a “cocky addict”.’
There was a ‘massive need for retraining’, both for consultants and drug workers, said another participant. ‘I pick up my methadone every two weeks and I’m supposed to see my doctor every two weeks,’ stated a third. ‘But I haven’t seen him in four months – my script is just left there for me to pick up.’
‘At the moment it seems to be about getting people out of services, and making services as unfriendly and untenable as possible,’ said Alliance CEO Ken Stringer. ‘It all comes down to a fundamental right to respect and empowering people to have that dialogue with a doctor about their own needs, rather than box-ticking.’ The rationale of some commissioners was to get people out of treatment, he continued. ‘They say it’s the national strategy – it isn’t. Because, really, there is no national strategy.’
One delegate however commented that she had been given ‘no encouragement whatsoever’ to come off methadone. ‘I had to do that myself,’ she said. ‘If you want to come off methadone you should be supported, but to coerce and force people off is wrong,’ replied Stringer. ‘But we also work with people who want to be drug-free, and their provider won’t let them have that.’
‘You should be able to choose to come off it 65 times if you want to,’ said Ford. ‘It should be all about choice. Recovery is becoming synonymous with abstinence, and that’s dangerous.’ A good idea might be stop using the word ‘treatment’ when it came to methadone, suggested one delegate. ‘We should use the word “tool”. It’s only a tiny part.’ It was important to ‘work together to stop people demonising life-saving medications, when it’s really about ineffective treatment,’ added ex-Alliance CEO Daren Garratt.
Service user involvement had brought about great change, said Cook. ‘But the focus is starting to go off that, I think, as is the money. It’s getting harder.’ Service users needed to strive to make sure their voices were heard in the localism agenda, including citing the NICE guidelines, he stressed. ‘Groups are critical to the whole thing – humans are social animals. We need to come together.’
‘We’ve got to really be the change, to make our voices heard,’ said Chris Ford. ‘You need to have those discussions with your local Health and Wellbeing Board. You need to get drugs and alcohol on the agenda, because otherwise it won’t happen.’
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On message
How do you set up a magazine? How do you engage with social media? Mark Brown and Nigel Brunsdon divided their communications workshop between the traditional and modern,
with advice for getting the best out of both
‘The challenge is to get from the service user experience something that works for everyone else,’ said Mark Brown, founder and editor of One in Four magazine, describing how he set up a publication for people needing support with mental health issues. ‘Use the personal experience as the fire that drives you.’
He had begun his venture as a service user wanting more information, a perspective that drove the content and style of the magazine.
‘I wanted to show real life through the prism of mental health,’ he said. This included plenty of ‘everyday stuff’, looking at lifestyle issues and how to deal with them, rather than focusing on life stories. He was, he said, adamant from the start that he didn’t want the publication to become just a forum for sharing personal stories.
‘A lot of people who have had mental health issues have had bad experiences and this becomes your story – it can become inescapable,’ he explained. ‘We wanted to jump the gap from something great for people working on it, to something great for people to read.’
With a group of colleagues, he ‘hammered out’ what sort of magazine One in Four was going to be, and agreed statements to define the point of the publication for people writing in it.
Participants in the workshop identified with this. A member of Wolverhampton’s Service User Involvement Team (SUIT) commented: ‘We do a magazine whose contributors happen to be service users. It has everything in – they don’t tend to be war stories.’
Had they considered just going online, asked one delegate. Brown responded that print had created ‘a unity of tone’ and ‘a point for people to rally around’ – and in practical terms meant that GPs could offer it to patients, saying ‘does any of this work for you?’
Perhaps most importantly, he said, it could bring you closer to other readers: ‘When you buy a magazine regularly it’s like joining a gang – “this is my magazine.”’
Nigel Brunsdon offered an online perspective, from his experience of contributing to websites and social media for his employers, HIT, and running his own site www.injectingadvice.com. Since the early days of Facebook and Twitter, he had explored their full potential, both in his job and at home.
‘We know these things work,’ he said. The advice he offered to delegates was around how to use them safely and effectively.
His dual approach to networking included people in his close circles, but also those linked more remotely with the drug and alcohol field, to expand his knowledge. Going online had the advantage of transcending time and distance, he said – a contact from Canada had helped him update a crack pipe project; another in Australia had helped with a late-night website problem.
While the design time for websites and social media could be the same as for printed magazines, posting took just seconds, said Brunsdon and he offered some tips for more effective engagement.
Use hashtags and make them as specific as possible, he advised. ‘And use questions when posting on Facebook – they work better than statements. People will engage and answer questions.’
Using YouTube on a website was a great way to attract traffic to it, particularly if you tagged, described and categorised your film fully. ‘Allow people to embed videos so you get plenty of hits,’ he said.
For Twitter, he advised delegates to ‘get your messages as small as possible so people can retweet easily. You don’t have to follow people back – see if they engage. If people abuse you, block them straightaway.’
‘How would you sell social media to an organisation that fears it?’ asked one delegate.
‘Sell it as a way to engage with user groups,’ suggested Brunsdon. ‘People are afraid of it because they fear that someone will say something bad about their organisation. But they already are, and they will – if you’re not there you have no voice.’ A concise social media policy would help to give clear boundaries, he added.
‘Be careful what you type, as what you write reflects your organisation,’ he said. Sites such as www.hoax-slayer.com could be useful in verifying suspect posts, he advised, cautioning that ‘the share button is so easy to use’.
But armed with enough know-how to get started, social networking could offer a wealth of resources and enjoyment, without impinging on real life.
‘Software helps you post at different times,’ he said. ‘If something’s interesting, share it.’
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Force for change
A diverse and lively group attended the workshop on setting up a successful service user group
‘Our organisation is here for people who aren’t yet members – it’s for people that don’t know who we are yet,’ said Peter Yarwood from the Lancashire User Forum (LUF), a thriving group whose members participated fully in the conference. Together with Kevin Jaffray and Jez Francis from Bedfordshire user group Sussed and workshop chair Neil Hunt, Yarwood went through the reality of setting up a group, emphasising the passion and commitment needed to maintain it.
Francis took delegates step by step, from brainstorming ideas about the group, to planning and organisation, with advice on essential practical issues such as finance and policy, to options for volunteering and help with employment. ‘It’s very unlikely that the difficulties you face are new,’ he said by way of encouragement.
Yarwood gave a case study of the demise and revival of LUF, recalling how it inspired him four years ago as a service user. ‘We looked at our values and what we wanted to achieve – we wanted to include everybody,’ he said. ‘We looked at service user involvement and what was going wrong, then looked at what was going right and built on that.’ The secret to growing the group had been in developing skills together and building relationships.
Francis also underlined the importance of mutual support and inspiration, and urged delegates to make the most of sharing ideas and networking. To illustrate this he quoted George Bernard Shaw: ‘If you have an apple and I have an apple and we exchange apples then you and I will still have one apple. But if you have an idea and I have an idea and we exchange ideas, then each of us will have two ideas.’
Robert Hickson of the London User Forum commented on the progression of service user involvement. ‘In London we now have weekend services provided by the service user organisations,’ he said. ‘Do you not think it’s about time the service user groups took the next logical step, turning into service user providers?’
Agreeing with the need for activism, Francis stressed the value of fresh ideas and individuality: ‘Is what you want to do new? Will it make a difference? If not, what’s the point?’
For Yarwood and many of the delegates present, the overriding message was of optimism and self-belief, which in turn would become valuable to the group: ‘You can get better, you can recover and you can become an asset,’ he said.
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‘Use your passions’
Apply your skills to overcome barriers was the advice offered to attendees of the employment and enterprise workshop
Turn your experiences – both good and bad – into something you can use to overcome barriers to employment or starting your own business, said Amar Lodhia of The Small Business Consultancy (TSBC), in a workshop chaired by Danny Morris.
By outlining his journey, from a troubled teen with substance misuse issues through to his successful business career, Lodhia explained how his social enterprise aimed to give service users the practical tools they needed to start up their own business.
Stabilise your environment before trying to progress any further, he advised. ‘Can you imagine being homeless, battling a drug addiction, and then trying to set up a business? It’s pretty much nigh on impossible because you’ve got day-to-day survival needs.’ Working from a stable foundation, using positive role models and incentives and mapping out the whole journey gave the ingredients to ‘reduce the gap between aspiration and opportunity’ and create a recipe for success.
Danny Morris raised the issue of stigma, highlighting that it was one of the biggest obstacles for service users to overcome when trying to get back into employment.
‘When you are labelled, there is stigma – they put you in a box,’ said Lodhia. Service users looking to get back into employment or set up their own business needed to ‘think outside the box’ to get ahead of other candidates. By using the skills that they already possessed, such as innovation and creativity, those who were passionate enough could edge out the competition by offering a different perspective to potential employers.
Just as importantly, a big part of getting people back into work was about ‘bringing the three forces together – business, government and entrepreneurs,’ he said. Smaller businesses were not constrained by the same rules as larger businesses and were much more likely to handpick employees and spot talent in unlikely places, so TSBC worked with them to help them think differently about employing service users.
For service users and employers alike, the task was to find a way around the processes standing in the way of progress, said Lodhia. One delegate pointed out the importance of taking risks in this process: ‘I’ve worked nearly all of my life in the public sector, and I’m incredibly risk averse – but risk can be a really positive thing if treated in the right way.’
The barrier of illiteracy was also discussed and Lodhia suggested that, rather than seeing a roadblock, the important thing was to learn new skills and link them together. Finding routes around obstacles was essential problem-solving – for instance TSBC had devised a phone app to create a CV without the need for PC access, and there were tools on their website to help with creating business plans. ‘Not being able to read or write is not a huge barrier in business,’ he said. ‘There are always ways around things like that.’
Viewing the whole process as a journey was key to success, said Lodhia. ‘Map things out – start with a simple business plan, which is the first thing the Jobcentre will ask for when using their enterprise facilities.’ The plan should be simple, he said, using seven steps to success that showed what the idea was, the reason behind it, where it would start, who would be involved, when it would begin and what research you had done.
‘Crucially, don’t just sit around and plan – get up and do it, he said. ‘If you’re passionate about it, that’s half the battle won.’ DDN