Everyone benefits when people have the opportunity to express their ideas to management. Rosemary Trustam was invited to join a group of Real Life Options‘s service users and support staff on a course about the different working elements of the agency.

Despite the cuts, some providers are making good efforts to develop the voice of their service users and give them real influence on the service. For example, quality checking with Paradigm’s REACH standards are being extensively used across services (www.paradigm-uk.org) and, more recently, Southdown’s Q-Kit, a quality checking tool they have devised in association with people with learning disabilities, is being offered to outside organisations with training for service users (www.southdownhousing.org).

Many organisations have embedded service users in the recruitment processes on formal interview boards, training and, more recently, appraisal systems. Real life Options (RLO) decided on a bespoke model to involve service users and staged an eight-week course in two different locations run by an independent external facilitator Susan Harris (of Susan Harris Associates) and supported by a graphics recorder Kath Broomfield.

Stimulated

I was delighted to be invited to join one group of RLO service users and support staff at the end of their course in Derbyshire. Initially, they had had workshops with each member of RLO’s Senior Management team to understand the different working elements of the agency; the one with Anthea Sully, Head of Public Policy, had stimulated the group’s interest in external public policy and voting.

Each participant had developed their own graphics-recorded profile and identified skills and interests on which to build the work and decide on personal aims to improve skills and build on their strengths. The team had looked at what they would like to influence and how. Sharing their individual profiles had helped the team develop as a group and work out ideas for action.

When I arrived they were putting the final touches to their show in which they were going to present requests to the Senior Management team. Tony Walker, the shyest member of the group, had a particular interest in newspapers and the group used these to explore different ways of presenting their ideas. They included recycling, shredding for the organisation, making fire fuel briquettes and designing paper handbags. The folded newspapers when designed and decorated made robust, attractive accessories’ made robust, attractive accessories. These were displayed and modelled by the team dressed in black or plain colours to set off the bags. David Griffin, a natural star, got into the spirit of the modelling, shimmying along to the music. Other stars included Dan Morrissey, sporting a pink wig, and Andrew Must.

Chief Executive, Brian Hutchinson, and Director of Human Resources and Operations, Tony Pearson joined the catwalk bewigged in luminous pink and yellow hair and ‘fancy dress’. The group judged the winning model as Tony Pearson who was presented with an award-winning handbag by designer Tony Walker.

The graphics recorded their prolific discussions and ideas relating to the different segments of the whole organisation’s work, from which they had drawn out their first ‘hits’. They had selected two areas to feedback to RLO’s senior management team. One was to develop a social enterprise for recycling using some of their ideas for newspaper and recycling. They asked for a small sum for the mould and press to make fuel briquettes. Brian Hutchinson suggested  they might like to ask for more, having seen the range of their enterprise ideas.

Influencing

More involvement in influencing staff recruitment, induction and training was the other idea, presented as a new staff induction evaluation form and feedback on practice observations. The scenario they acted out showed a new member of staff joining an established team keen to support the person with learning disability’s interest in going to a fair (he’d heard one was in the town the next evening). The established team said more notice would be needed as that evening was shopping night! The new staff member returned his form and the HR person picked up on this as an area previously reported and the need for some re-training.

Apart from the clear commitment shown by the attendance of the whole of the senior management team to hear service users’ ideas, what was striking was the confident way the group presented their ideas with every member of the service user group having a role which built on their strengths.

This approach built on people’s self-advocacy skills  by giving them a good understanding of how the agency worked. It focused on identifying and sharing their skills, interests and needs and using them in their action plan to increase their influence over the agency, both in one-off investments and ongoing involvements.

And everyone had fun!

Mark and Tracey Drake got married in 1998 and recently renewed their marriage vows. Their commitment to each other has had to overcome trials and tribulations that would have caused division between many couples. Yet their relationship and loyalty to each other grew with every challenge. Andrew Holman recounts their heartbreaking story.

Mark and Tracey Drake renewed their wedding vows recently in the Baptist church in Colchester. As I was writing a short speech as best man I thought the story of our friendship warranted retelling. After the ceremony I travelled to Colchester to hear their story again and learn about their lives now.

I first met Tracey in the early 90s when I was supporting a group of people with learning disabilities to start a People First group in the town. Tracey’s energy was catching and I made sure she was asked to be involved in an advocacy development project for Values Into Action. This project had an impact locally when we took the council to judicial review about aspects of their service provision.

Through this involvement she met Mark at a People First meeting in London. Tracey had been going out with a local man. “He didn’t like people with learning disabilities,” she says. “He didn’t let me meet any of his friends in case I showed him up and he was always asking me for money”. She was being horribly used and abused.

Mark had been visiting Colchester more and more frequently but when they decided to move in together people expressed opposition to the idea.

Barriers

At the time Tracey rang me asking for advice and help. “My social worker didn’t like the idea and made threats if Mark didn’t go back to Croydon,” she recalls. Mark’s family were also putting up barriers. He says: “My carers said Tracey would pinch my money and leave me with nothing, even though I didn’t have any because they looked after it all for me”.

We hatched a plan which Tracey describes as ‘kidnapping Mark’ – I prefer to call it ‘helping a friend move house’. We drove down to Croydon one dark night when we knew not many people were around at Mark’s care home. Marks says: “They weren’t very happy about it but it was our right to live together if we wanted to”.

Tracey, Mark and I did more work together on various VIA projects. We made rights videos* and spoke at numerous conferences all over the country. Tracey was the first person with learning disabilities I knew to get a legal Direct Payment after the legislation came into force and I employed Mark to talk to self-advocacy groups to explain Direct Payments and how to benefit from them.

It was the summer of 1998 and I had a problem. Mark and Tracey were getting married in the same week Mark and I had been asked to speak at a large international conference in Holland. Quite rightly, Tracey didn’t want her new husband leaving her alone straight after the wedding. She remembers: “I liked your way around it – you borrowed your friend’s camper van and we all went away together. We made you go for long walks in the forest in the rain so we could have time together!” The conference was a success but I’ve never felt such a gooseberry.

Their thoughts turned to having a family and we talked long and hard about the added dangers parents with learning disabilities face. Lewis was born the following year with no care or support plan and little help from social services. As I feared, child protection did express an interest and a conference was called to put Lewis on the at-risk register. Tracey recalls: “It was all rushed as they were late starting, we weren’t allowed to talk and they didn’t really listen to you Andrew, despite all the work you had done in courts with parents with learning disabilities. We didn’t understand what was happening at all”. Nonetheless, the vote went against the social worker and a support plan was put in place.

My next visit was to discuss the possibility of Tracey going on the Jeremy Kyle show to talk about being a parent. “We wanted to show that it was possible for people with learning disabilities to be good parents”. I was firmly against the idea and instead we got a good documentary producer involved. We discussed the risks but they went ahead and the film, Unfit Parents?, went reasonably well apart from when Mark disappeared for a while. The public and professional reaction to the film was all positive.

Fears

They decided to have a second child. I was anxious and feared they would not be able to cope with two children and get the right support for them. Unfortunately, this time, all our fears came true. Tracey and Francesca, the new baby, were discharged from hospital late at night after Mark had been given a crash course in how to give the baby the medicine she needed. The following morning he had forgotten. Tracey tried to wake him but, as she explained: “He stayed in bed and wouldn’t get up to help. I was scared as I didn’t know what to do”.

When their support did arrive later that morning, Tracey said she thought she might have given the wrong dose. A quick check with the hospital confirmed this would, at worst, give her an upset tummy but asked for her to go down to see them.

After just 14 hours, Francesca was never to return home.

Tracey says: “All hell broke loose.  They called me an awful mother and said I didn’t know how to look after her”. The social services spotlight turned again on to Lewis and, to cut a long story short, their every action was spun negatively and he was lost to them as well.

“We should have had proper support to look after them ourselves”, Tracey says.

Francesca has been adopted and they are not allowed to know where she lives, although they have yearly contact and a Christmas card. Lewis is fostered locally and they see him quarterly. He still has the learning and behaviour difficulties that were blamed on their lack of parenting skills several years before.

Mark and Tracey are trail blazers. They have often had to rely on each other rather than services and have been able to help, support and inspire many others, even using their bad experiences to warn people about what could happen; for example, Tracey employed her neighbour as a carer without doing the proper checks. Before long they had been swindled out of £2,300 by people up to their ears in debt. This example made us aware of the problem of Mate Crime. It also showed that we needed to make sure vulnerable people on Direct Payments had better support.

I have always been impressed by Mark and Tracey’s commitment to each other. They have faced trials and tribulations, adversity after adversity that would have caused division between many couples. Yet their relationship and loyalty to each other grew with every challenge, strengthened by their starting to go to church. “We decided to get baptised. The church is very supportive and always there for us”, says Tracey.

I still have regular calls from Mark and Tracey with some new scheme or another. The one I enjoyed most recently was the invite to join them in renewing their vows in church – a great excuse to get the old Rolls out. “It was lovely to have everyone looking at us and waving. I felt very special”, recalls Tracey.

Asked if they would change or do anything differently, Mark says: “No, I’d do it all again” but Tracey admits she  couldn’t go through all that heartache, stress and worry of her baby being taken away again.

Horrible label

She says: “We feel let down and angry. People like us have a horrible label put around our necks. I’m not going to take it. If professionals don’t like it, that’s tough.”

I mentioned the many times I felt I had let my friends down when we haven’t got the support or result we wanted. But Tracey kindly said, “I think of you as a father figure – you and Yvonne (my wife) are like family and make us feel safe. I’ve never had that before.”

Andrew Holman is director of Inspired Services.

The Government has signaled its support for the principles of supported employment and its willingness to work with local authorities. This enthusiasm needs to be matched by local authorities, NHS trusts and further education colleges collaborating to continue to invest in high quality local support, says Huw Davies. 

Action to help disabled people into work is urgently needed. Employment rates for adults with moderate to severe learning disabilities hover stubbornly around the 7 per cent mark though this varies considerably with rates being significantly lower in the north. For adults who use secondary mental health services, the rate has improved to around 9 per cent while around 15 per cent of people with autistic spectrum conditions are said to be in work. The latter is an unofficiaI estimate as nobody collects figures.

It is encouraging that DWP seems open to new ideas about how best to support people with disabilities into work. Off the record, they are saying that the way they commission employment services isn’t working and they want to better understand what works.

Cross-Government review

We are currently going through a cross-Government review of the disability employment strategy, a process that began in early summer but isn’t officially a full consultation. The review follows on from Fulfilling Potential, published in September 2012, which sets out the Government’s approach to supporting disabled people to “fulfil their potential and play a full role in society”.

This was followed by Fulfilling Potential: Building a deeper understanding of disability in the UK today, a document that analyses the data around the current experience of people with a disability in the UK. We’ve also had Getting in, Staying in, Getting on, Liz Sayce’s report of specialist disability employment support and Raising Aspirations, Rachel Perkin’s review of mental health and employment. Both sought to identify what works before making recommendations for action.

As CEO of the British Association for Supported Employment (BASE) I am uncharacterically optimistic as I think DWP finally understands that employment support is complicated and that a generic approach will not suit everybody. There is a recognition that different approaches are needed for different customer groups and that within these groups there are individuals with a diverse range of needs.

The starting point has to be a deep understanding of what works best for whom. We know that many people require light touch support. They should be supported by mainstream services because their impairment requires fairly simple adjustments and facilities. And yet the experience of profoundly deaf people using their local job centre is not a happy one. BSL interpreters are routinely unavailable and the system unintentially discourages their engagement.

In theory, there is no reason why the mainstream shouldn’t be able to offer more individualised support to people with a disability. This was the idea behind the use of differential payments within the Work Programme. In reality the Work Programme has been appalling at supporting people on Employment and Support Allowance. Performance has been well below the minimum levels set by Government and shows little sign of improving. It’s particularly poor for those who have been reassessed from Incapacity Benefits. This is not surprising with a target-driven programme that encouraged providers to tender at low prices. They are reluctant to invest time and effort on individuals they perceive as the ‘hardest to help’.

If ‘hardest to help’ is meant to refer to people with learning disabilities it is unhelpful to say the least because 65 per cent of them want to work and we know that motivation is one of the most important factors in achieving employment.

Work Choice, the Government’s national disability employment programme, very nearly didn’t happen. It’s well known that at least one minister wanted a single programme that would use differential payments and a supply chain of specialists to support everyone. I’m sure they’re glad that didn’t happen. Work Choice performance has steadily improved as the programme matures and I’d expect job starts to plateau at around 40 per cent.

Persistent concerns

Yet all is not well with Work Choice. While it’s undoubtedly streets ahead of the Work Programme in its ability to support people with disabilities there are persistent concerns about the ability of people with significant disabilities to access the programme. I’ve never understood why a more specialist programme should have a shorter time to find someone a job than the mainstream programme but the result has been that many people have been filtered out by Disability Employment Advisors who think that they’re not ‘job ready’, whatever that means, and will be unlikely to become employed within 12 months. Work Choice was designed so that referrals could be made directly to the programme by health and social care providers, thereby bypassing the DEA. This Statutory Referral Organisation referral route works well in some areas but has collapsed in others.

What should be done? Work Choice is due to end in 2015 and we’re not sure what will come next. There seems to be a consensus that a disability programme should continue but that’s not much help if you can’t get on it.

The Government review has established a range of task and finish groups. These are covering themes such as Young People and Transitions, Labour Market Interventions, Engaging Employers, Job Retention. There is a group looking at mental health issues, the only disability-specific task group. There has also been a series of regional consultation meetings. Former Minister for Disabled People, Esther McVey, launched an excellent campaign to engage employers through the Disability Confident initiative. All of this is to be applauded.

The problem is that DWP has such a high turnover of staff that they’re in danger of forgetting all the evidence identified in the past and so we have to start from scratch, again. This is compounded by having three different Ministers for Disabled People in 16 months. This strategy review is meant to be co-produced. I agree with the principle but in practice that seems to mean involving an Olympic athlete or two in the discussions. There’s a real danger of a disconnect between policy makers and the reality of life for people who simply want a job.

Best practice

Before Valuing People came to an end three years ago, much work was done to identify best practice and to pilot different approaches. We had Project Search which led to the current roll out of supported internships and Jobs First which sought to braid different funding streams through individual budgets, later followed up through In Control.

Liz Sayce’s report came down heavily in favour of personal budgets. While I have no objection to people using personal budgets there is no evidence that it has led to significant improvements in employment rates or that the retail model it demands can function in a welfare to work environment. Jobs are not a commodity that can be bought. You can buy the process but at  £5-10,000 personal budgets are nowhere near sufficient to buy that level of support. Instead, personal budgets have undermined the cause of personalisation as they become a vehicle for rationing support.

If you want to buy something, you need to make an informed choice based on knowing what is your best option. Jobseekers and employers have no way of knowing which services are the best because we don’t have an inspection or ratings system. Quality has gone out of the window at a time when resources are tight and outsourcing at the cheapest rate is favoured. It is hardly surprising that support is not as effective as we, and jobseekers, would like.

We know what works. Supported employment works. It’s been around for over 30 years, surviving on fragmented funding and operating under the Government radar. It’s not complicated; individualised support that identifies people’s strengths and aspirations, focuses on job outcomes, identifies good job matches and provides ongoing support to disabled workers and their employers.

The trouble is that supported employment is mainly delivered only by specialists, generally small local organisations who have been excluded from the current round of DWP programmes. The challenge is to harness this expertise in a way that is manageable for jobseekers, providers, DWP, and employers.

BASE has submitted proposals to the strategy review. We favour the continuation of a mainstream disability programme like Work Choice but we also propose a third tier of provision, one that is locally commissioned but attracts national funding. The reality is that people use a range of local services and employment needs to link into them. People with substantial disabilities do not walk into job centres and so we must go to them to raise aspirations for working.

We’ve seen in areas like Windsor & Maidenhead and Gloucestershire that employment rates can be improved dramatically by coordinated local support. Employment rates for people with learning disabilities have doubled in a year or two in both these areas. Because supported employment is not a statutory duty there has been significant disinvestment in services over recent years. We need DWP to acknowledge the effectiveness of this provision and to signal its support by using national funds to reward job outcomes.

Sustainable jobs

The challenge will be to replicate this success in other boroughs. This will require investment in workforce development and quality assurance processes as well as a single-minded focus on achieving sustainable jobs. We now have agreed National Occupational Standards for the sector and Ofqual approval for a Level 3 Certificate for Supported Employment Practitioners. BASE hopes to start delivering the certificate in early 2014.

We’re also consulting on a set of draft quality standards for the sector. There is no point in encouraging a market of providers if the customer has little information with which to differentiate between them. Employers have cried out for better coordination of employer engagement. They have no idea of the quality of local support which is why they have signed national agreements with well-known providers. A quality kitemark will help them to have confidence in working with local providers.

We have never had a better opportunity to influence the debate. The Government has signalled its support for the principles of supported employment and its willingness to work with local authorities. This enthusiasm needs to be matched by local authorities, NHS trusts and further education colleges collaborating to continue to invest in high quality local support.

Huw Davies is Chief Executive of the British Association for Supported Employment.

The message from Stop Hate UK is, don’t suffer in silence if you are experiencing hate crime. There is now a confidential helpline open 24 hours a day every day of the year offering help and support. Una Morris explains.

Stop Hate UK is a national charity providing independent and confidential support to people affected by all forms of hate crime. Stop Learning Disability Hate Crime is a 24 hour helpline for people in England and Wales to report learning disability hate crime and receive support. It was launched on 29 January 2013.

The helpline has already demonstrated its worth by the number of people accessing support from the service, with 62 of 114 contacts between January and June 2013 reporting incidents. We are also able to offer support to people who have no new incident to report; for example, 32 of our contacts were from repeat users of the service who wished to access support relating to an incident they had previously reported or to give an update on the progress of their case. Two people requested support of a kind the helpline does not offer and the remaining contacts were from agencies requesting information on the service.

Threatening behaviour

Many different kinds of incidents were reported, including criminal offences. Examples include physical assaults, sexual assaults, criminal damage, harassment and hate-motivated anti-social behaviour. The two incidents most often reported were threatening behaviour and verbal abuse.

Incidents happened in the street, on or around public transport, in shopping centres, day centres, and also in victims’ own homes. People with learning difficulties are often repeatedly targeted by the same people and sometimes by lots of different people. Perpetrators are sometimes strangers but often the perpetrator and victim know each other.

We have also received a number of reports of ‘mate crime’, in which a victim is targeted, befriended, exploited and taken advantage of by a perpetrator. This might include financial abuse or sexual exploitation or moving into someone’s home when this is not wanted. Mate crime is notoriously under-reported with the victim seeing the perpetrator as a friend.

Victims of mate crime usually have a choice as to who they associate with making it difficult or impossible for others to help them. We strongly believe in autonomy and in the rights of victims to make decisions about their lives and the incidents they may be experiencing. By working with victims and listening carefully to their experiences, we can help them to understand that what is happening to them is wrong and empower them to take steps to access additional support.

One case involved a man with learning difficulties who was targeted by a man he was friendly with at college. On a number of occasions the ‘friend’ asked the man to lend him money, saying he was having problems paying his rent or buying food. The man wanted to help the person he believed to be his friend and handed over cash each time he was asked. By the time he contacted Stop Learning Disability Hate Crime he had given away several hundred pounds and had not received any of it back. Eventually he began to see himself as a victim of mate crime by his so-called friend. This man gave consent for Stop Hate UK to tell other agencies about what had happened.

Callers to Stop Learning Disability Hate Crime are offered more than just a safe and confidential space to talk about their experiences. We are able to make referrals to the police if they are happy for them to be involved. If a caller does not want to involve the police, for whatever reason, Stop Hate UK can make anonymous referrals without identifying the caller. The organisation’s Hate Crime Advocate is able to offer follow-up advocacy support to callers and make referrals to other organisations in England and Wales, depending on where the caller is based and their needs.

Targeted

Stop Learning Disability Hate Crime isn’t just for people with learning difficulties who have experienced an incident themselves. The helpline is also able to support people who have been targeted because someone mistakenly thinks they have learning difficulties or because they are related to or friends with someone who has. We can support the friends, family members and carers of people  experiencing hate crime or agencies working with people experiencing it. Where someone calls on behalf of someone else, we always ask for the victim’s consent to make referrals.

Stop Hate UK encourages everyone, whether or not they have a learning difficulty, to report anything they see which may be a hate crime.

The real value of the helpline, and what makes it unique, is that it is open 24 hours a day, every day of the year. This means that whatever time of day or night, people affected by learning disability hate crime have someone to talk to about what they are experiencing and how they feel. Of the 114 contacts received by Stop Learning Disability Hate Crime between January and June 2013, 49 were received outside the hours 9am to 5pm, Monday to Friday, demonstrating the need for an out-of-hours service. Typically, over 85 per cent of all calls to Stop Hate UK are answered within four rings.

Since launching the helpline Stop Hate UK has developed a range of accessible publicity materials to promote the service, including wristbands, A3 easy-read posters in English and Welsh and smaller easy-read cards. We aim to make sure that everyone in England and Wales knows about the service because anyone can be affected by learning disability hate crime.

[su_box title=”Una Morris, Stop Hate UK” box_color=”#718aee” radius=”0″]

Patron – Baroness Doreen Lawrence OBE
Ambassador – Adrian Derbyshire, Great Britain Athlete
Stop Hate UK is a registered charity, Registration Number 1062692.

Email: una@stophateuk.org
Twitter: @_umm_
Main office: 0113 293 5100
Mobile: 07951 536 235

The helpline number is 0808 802 1155. Calls are free from landlines and most UK mobiles.

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Mencap released a report for Hate Crime Awareness Week (12-19 October) giving some shocking figures on the incidence of hate crime against people with learning difficulties. The charity is calling for the law to be reformed.

The number of disability hate incidents (not all necessarily crimes) is higher than the number of homophobic and religious-based hate incidents. The British Crime Survey estimated there were 65,000 disability hate incidents in England and Wales in 2010/11.

Mencap’s report Living in Fear (2000) found that almost 9 in 10 people with learning difficulties surveyed had experienced bullying or harassment in the previous year. Of these, 66 per cent were regular victims and 32 per cent were being bullied on a daily or weekly basis,  73 per cent experienced bullying or harassment in a public place, 47 per cent suffered verbal abuse and 23 per cent had been physically assaulted.

Despite laws against disability hate crime in force since 2003, it wasn’t until the tragic deaths of Francecca Hardwick, who had learning disabilities, and her mother Fiona Pilkington in 2007 that they were widely enforced. Their bodies were found in a Leicestershire lay-by in 2007. Ms Pilkington had  poured a 10-litre can of petrol over the back seat of the car before setting it alight. The family had suffered years of abuse from a gang of up to 16 youths. An investigation uncovered numerous failings by the local authorities.

There are several ‘strands’ of hate crime: disability, race, religion, sexual orientation and gender identity. Although all are included in the Criminal Justice Act 2003, there are significant differences in the strength of the laws for each strand. The Law Commission is currently reviewing hate crime law and will make recommendations to the government on whether the law should be reformed so it’s the same for all strands of hate crime. Mencap has recommended to the Law Commission that all provisions be extended to disability hate crime. They believe that hatred towards disabled people is just as damaging to individuals, communities and wider society as hatred towards people of a different race or religion, and this should be reflected in the law.

The vast majority of people with learning and other disabilities who are victims of hate crime do not get justice. Despite the huge numbers of crimes that take place, only around 3 per cent are recorded by the police as hate crimes and only 1 per cent lead to convictions. In the past couple of years, the number of disability hate crimes recorded by the police has been improving but this has not led to an increase in convictions. We know part of the problem is that not many victims report disability hate crimes, or they may report a crime once but get a very negative response from the police and so never report again. Mencap’s Don’t stand by report found that people  felt that police officers often ignored them or did not know how to communicate with them properly.

Even when people report hate crimes, and the police record them accurately, cases where the victim has learning difficulties rarely get to court after the CPS questioned the reliability and credibility of the victim. And even when the case gets to court and leads to a conviction, judges are not consistently using the sentence uplift so victims are still being denied full justice.

The Hate Crime (People with Learning Difficulties and Learning Disabilities) Bill 2013-14 is a Private Members Bill sponsored by Ian Mearns. It requires police forces to register hate crimes committed against people with learning disabilities. It was introduced to Parliament on 30 October 2013 under the Ten Minute Rule and is expected to have its second reading debate on 24 January 2014.

No Going Back: Psychodynamic Perspectives on Community Living for People with Learning Disabilities was the title of a day organised by Hertfordshire Partnership University Foundation Trust, Hertfordshire University and the Association for Psychoanalytic Psychotherapy in the NHS on the theme of community living for people with learning disabilities. Report by David O‘Driscoll and Georgina Parkes.

Research has shown that for the majority of service users the change from long term institutional care to community care has been positive. But it would be wrong to say that this has not been without its challenges and problems.

The emphasis on the day was on the psychodynamic approach. As the organisers we believe that having an understanding of some of its key concepts will bring greater understanding of a person’s behaviour.  The majority of delegates were from Hertfordshire Partnership University Foundation Trust (HPFT) but some came from as far away as Bristol, Manchester and Derbyshire.

Tom Cahill, HPFT Chief Executive, opened the day with a historical account of how services have developed in Hertfordshire from the impersonal wards of the long stay hospitals to the exciting future development at Kingsley Green.

Portrayed as happy

The key note speech was by Professor Jan Walmsley, an independent researcher and teacher with an honorary position at the Open University. She gave an overview of where we are now after the long stay institutions closed and people moved into community services. While there have been many positive developments, Professor Walmsley pointed out that in most of the literature people with learning disabilities are still portrayed as happy and smiling, which leaves us wondering how people can express their sad or difficult feelings. She quoted Valerie Sinason, “The new beautiful community homes provide an even more disconcerting backdrop for communications of despair.”

Self advocate, Carole Lee, spoke about what it was like receiving services in a community setting, including her mental health experiences. Carole was positive about the help she received from the Trust’s specialist learning disability psychotherapy service after her mother died. In fact, she provides training with David O’Driscoll to the local bereavement service Cruise on working with people with learning disabilities.

Carole received a CBE for her work on the 2001 Government White Paper, Valuing People, as part of the self advocate team.

She gave an account of complaining about a member of staff and how, as a result, the staff team completely changed their attitude to her.

Professor The Baroness Sheila Hollins spoke about her role as a learning disability professional, the mother of a child with a disability and now as a politician. She is a former professor of Psychiatry of Learning Disability and President of the BMA and Royal College of Psychiatrists. Now, as an independent cross bench peer in the House of Lords, she makes good use of her role to advocate for people with learning disabilities, putting her hand up and asking, what about people with learning disabilities?

She talked about the stigma people with learning disability face including more subtle forms such as how to respond to articulate people.

Baroness Hollins founded and chairs ‘Beyond Words’ publishing a series of accessible picture books. She described how she uses these books in therapy and how she set up book clubs in her workshops.

Challenging setting

An entertaining and optimistic view of working in a forensic setting, Rampton National High Secure Hospital for people with learning disabilities, was presented by Jon Taylor, Consultant Forensic Psychologist and Psychotherapist. Dr Taylor has set up a therapeutic community based on Maxwell Jones’s original ideas. He talked about the challenges of this approach in such a setting, for example, staff swapping shifts because they did not want to attend groups and listen to the often painful topics under discussion. Significant improvements included staff being less afraid of change, feeling less cut off and a reduction in criminal thinking and hostility.

A state-of-the-art overview of what we know about the practice of psychodynamic psychotherapy with people with learning disabilities, and how to adapt practice,was given by Professor Nigel Beail, clinical psychologist at the University of Sheffield and Head of Psychological Services with Barnsley NHS Trust. Professor Beail’s presentation was based not only on his research but on his clinical work as a psychoanalytic psychotherapist. He talked about the client directing all their efforts to maintaining their own psychic equilibrium which is dysfunctional by the time they reach therapy.

Listening and observing

The purpose of therapy is to disturb this and ultimately bring about change. Professor Beail discussed the basic techniques of listening and observing, information giving and education which are not often part of traditional psychoanalytic techniques, as well as exploring, reflecting, confronting and attending to the counter transference.  Interpretations need to be given in clear, open and undemanding language (for example, using words of less than two syllables if possible), not given with a question and the present discussed before current or past experiences. Behaviours and emotions need to be linked and spelt out to clients,  ie. when you do this you feel like this.

Professor Beail talked about the evidence base which, though thin, shows positive outcomes. There is still a preference to evaluate challenging behaviour therapy models and a resistance to use psychodynamic models.

The evaluation forms showed a general theme of wanting more, more time for each speaker, more discussion and more events like this. People found it useful and helpful in their work and inspiring. One person gave emotional feedback that the day had helped him to find a way forward in his job. “I had a lump in my throat”, he wrote. “Thank you for an inspiring day”.

Another wrote: “I work in residential care and do not fully understand your language but found the day interesting, insightful and motivating. A very good day.”

And another said: “Should be delivered to every psychiatry trainee at the beginning of their training and every year after that. Please, please persevere and do it again.”

We are hoping that a major outcome of the conference will be an opportunity to develop a postgraduate short course on psychodynamic thinking at the University of Hertfordshire Centre for Learning Disability Research.  The day will go some way to cementing the position of psychodynamic work in Hertfordshire.

David O’Driscoll is a psychotherapist and Dr Georgina Parkes is Consultant Psychiatrist with Hertfordshire Partnership University Foundation Trust.

Professionals must be aware of carers’ need for support when their relative has to go into a special unit. Clear communication and continued involvement of carers could prevent them feeling disempowered and devalued. Neil James reports on the findings of a research project 

Background 

The growing recognition of the additional health needs of men and women with learning disabilities puts responsibility on all services to assess and plan care to meet these needs and those of their carers. Carers often have to cope with mental health and behavioural distress and this can be compounded when their relative is admitted to a learning disability specific in-patient setting or an Assessment and Treatment Unit.  However, there is extremely limited research exploring the experiences of family carers and professionals at this difficult time.

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Findings 

For carers the admission of their relative to a specialist in-patient setting had a significant influence on the way in which they viewed and understood their sense of self and identity. The experience was particularly affected by the relationships they had with professionals when negotiating the additional needs of their relative.

Carers experienced high levels of anxiety, stress and uncertainty about the future of their relative and their role as carer. Some felt they lost influence over their relationship with their relative as they became subject to the control of professionals. They felt disempowered and devalued.

Professionals were shown to have a pivotal role in influencing how carers viewed their sense of self, value and importance.  Carers reported valuing support from professionals who were accessible and facilitated relationships based on honesty and trust.  Furthermore, having their views and opinions valued by professionals made them feel valued as carers.

Professionals did understand that their relationships with carers had an important influence on the value carers felt they had in the on-going care and support of their relative. They also appreciated that they can influence the way in which carers cope with the changes happening in their relative’s support needs. However, in practice, this was recognised as not always being translated into supportive action. Shortage of time and the availability of practical and financial resources presented barriers to supporting and involving carers.

Effective communication – being open and honest – was  thought most important in supporting carers. This is essential if trusting and understanding relationships with an appreciation of each other’s perspectives are to develop. Effective communication includes ensuring that carers are provided with information that promotes their sense of involvement in decisions about care. Crucially for professionals this involved recognising the expertise and knowledge carers bring to support care planning.  Rather than professionals assuming control, a shared approach to planning and decision-making was important.

Clear communication and continued involvement of carers could prevent them feeling disempowered and devalued.

Consistent support for carers can also be improved by professionals and services working together.

An important influence on the quality of support carers receive is the attitude practitioners bring to their roles. Attitudes and working practices which do not support carers need to be questioned and changed.

Study:  Family carers’ experience of the  admission of their relative to an Assessment and Treatment Unit

Aim: This study aimed to explore family carers’ experience of the admission of their relative to an Assessment and Treatment Unit

Methods: This was a two-stage qualitative study. In stage one the lived experience of six family members, three mothers and three fathers, was explored using semi-structured interviews. The second stage involved interviewing nine professionals in learning disability specific services, using individual interviews and a focus group.

Conclusions

To ensure carers feel involved they need to be given information and recognition for their expertise and knowledge.  A shared approach to care planning and decision-making are important so that carers do not feel disempowered and devalued.

Professionals not only need to provide information to carers they also need to be pro-active in planning and facilitating their involvement. The attitude of practitioners can have a significant influence on relationships with carers. Values and attitudes which have a negative impact on carer support need to be challenged and addressed by improving understanding of carers’ needs.

The actions and behaviours of professionals have a significant role in shaping carers’ views of themselves and their identity.

Key Messages

• The need for admission to an in-patient setting is a time of distress, uncertainty and confusion for carers.
• Carers’ relationships with professionals have a pivotal role in influencing their sense of value and identity.
• The involvement of carers in decision-making and care planning processes needs to be facilitated by professionals.
• Relationships between carers and professionals need to be underpinned by openness and honesty.

References and further reading

James, N. (2011) Working with families, in Atherton, H. and Crickmore, D. (Eds) Learning Disability: Towards Inclusion (6th Ed.), Chapter 22, Elsevier Ltd, London.

James, N. (2013) Enhancing relationships between family carers and professionals, Learning Disability Practice 16(6): 34-37.

Neil James is Senior Lecturer

Unit for Development in Intellectual Disability, University of South Wales.

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The first event of the Social Care Support Network, Managing Risk in a Person-Centred Way, was opened by Birmingham City Council’s Strategic Director of Adult Services Peter Hay. Both personalisation and risk involved standing in others’ shoes and seeing the world from their perspective, he said. The main speaker was Margaret Flynn, chair of Lancashire’s Adult Safeguarding Panel, who chaired the Winterbourne Serious Case Review. She described the failings which led to the scandal revealed by Panorama in 2011.

Rosemary Trustam reports

Castlebeck which ran the now infamous private hospital Winterbourne View, was owned by CB Care Ltd, which itself was owned by the Jersey limited partnership, Lydian Capital Partners LP, acquired in 2006 by the Swiss-based private equity group Lydian and backed by a group of Irish millionaires (Private Eye, Nov 2012).

Margaret Flynn cited this report in describing the circumstances that led to the abuse. No one asked why, when NHS commissioners sought placements on Friday afternoons, Winterbourne always had vacancies. Nor did they enquire into the cost at an average of £3,500 a week, one woman costing £10,000 a week.

Distant localities

The hospital held patient review meetings without relevant professionals from distant localities.

How could a unit be built on an out of the way business park, nowhere near public transport, when it was not required by local services and was completely against national policy? she asked.

Margaret detailed the failings leading up to the scandal.

• CQC inspectors relied too much on self-reporting and paperwork;
• An acting registered manager was in post for two years;
• Recommendations made by the Mental Health Tribunal, including on the use of restraint, were not followed up;
• Health & Safety Executive received reports; Adult Safeguarding treated any reports as isolated incidents
• There was no pulling together of reports (reports indicated there were no complaints but the police found stacks in the manager’s drawer);
• Turnover of staff was 400 in the five years since it opened;
• Some staff were homeless and were not CRB-checked;

There was dangerous and illegal use of restraint which necessitated accident and emergency visits – with at least one reported concern from a consultant who told staff that the injuries didn’t match the explanation.

The whistle-blower, a fairly new member of staff, initially went to the manager, then to the regional manager twice, then to CQC three times (they say twice) before going to the BBC.

Systems and processes don’t protect people. “It is people who keep people safe,” Margaret said. “When people are locked away in a remote place, they are only likely to be honest with people they trust – and the people who knew them were far away”.

Services which pose high risk to residents and staff need strong governance. Winterbourne View just presented a business opportunity for investors. The Social Care Support Network (SSCN) is open free to anyone supporting its aims.

Email: info@socialcaresupportnetwork.com.

This is the account of an inspector who worked in different organisations for many years and experienced what she describes as a dramatic and deeply insidious cultural change. The writer, who is now retired, wishes to remain anonymous.

When I started work as an inspector with social services I felt lucky. I had a relevant professional background and a wealth of experience. I had worked in senior positions in homes for people with learning difficulties and had been privileged to have worked for two years in one that was acknowledged to be way ahead of its time. I was confident about what I should be looking for and I felt the role gave me the opportunity to offer providers a balance between professional advice and support and, where necessary, a more formal approach.

I was largely welcomed when I visited homes. Most people were caring and wanted to put good ideals into practice. Others were excited to learn modern approaches which encouraged service users to lead their own lives. Mistakes could be serious so people welcomed advice.

Flicking jelly babies

Concepts of ‘risk management’, ‘informed choice’ and ‘normalisation’ were not always properly understood leading, for example, to Julie being left to fend for herself in a dirty chaotic room as a ‘consequence’ of failing to follow her cleaning rota; or Tom who had joined a cult because they were apparently showing a personal interest in him (and his benefits) whilst those who were supposed to be supporting him were ‘leaving it to him’. Or quiet Paul, who always complied with organised activities he had no interest in and whose challenging behaviours had progressed from flicking jelly babies at other service users on the minibus to greater disruption!

People were keen to hear progressive ideas and hungry for help. Cynics might say they had no choice but to listen since I was the inspector but in those days inspectors each had a caseload of homes to be visited a minimum of six times a year and people came to know and value you. I was supported by a thoughtful ‘boss’ who had a social work background and years of experience. She enabled us to fulfill a role which was more advisory than enforcement (although I should stress that we would always address bad practice through the formal process when there was no hope of changing things any other way).

For a few years I was an inspector in an authority specialising in provision for people with learning difficulties so I saw a wide range of approaches to care which enabled me to keep in touch and my professional knowledge up to date. This specialisation was lost when inspection became ‘generic’. I still feel strongly that knowledge and experience of a client group, and the experience of practice, is essential when inspecting for quality of care, and for spotting potential abuses. When change came, I remember how many of the experienced inspectors fought to keep the specialist approach, but sadly this did not happen. Organisational change was imminent. My ‘boss’ was given early retirement.

Then came the computers, reams of paperwork and new buzz words. Laws and Standards were rewritten with the formal measurement of care seen as of paramount importance. I often felt I was being asked to measure the homes’ management and delivery of care in a quasi-scientific way and that this handicapped me from using my professional judgement to evaluate the service users’ quality of life, rights, freedoms and choices and protection from abuse.

Inspect and enforce

Priority seemed now to be given to the publication of reports and all that this entailed. Scores and ratings were the order of the day. Inspectors were told that their duty was to inspect and enforce and that homes should buy in their own advice from trainers and consultancies since giving extra guidance was not the inspector’s role. Access to information by the public, albeit to highly edited information, had become our raison d’être.

Thus the process of inspection itself fundamentally changed. Where once I felt I had been employed for my knowledge, experience and judgement I now felt I was someone who ticked boxes for evidence. How each service user was actually faring in the home was looked at less as inspectors became overwhelmed with timeconsuming standardised procedures and inspecting systems.

In this new world processes were too restrictive. For example, the process for inspection included in depth ‘case tracking’ of a few individuals. We had to cross reference their records against interviews with the service user and staff and an inspection of their room. This focus on the whole experience of a few individuals rather than on an overview of issues for many I believe led to tunnel vision about the running of the home, particularly in large homes where random chance played a role in choosing which residents were ‘case tracked’. Not all residents or rooms were even seen.

A consequence of this was that in some poorly-run homes difficult residents were taken out on the day of the announced inspection so that inspectors would find it difficult to ‘case track’ them. Once, while ‘case tracking’ I observed another resident, who was not being ‘case tracked’, being infantilised by a staff member. I acted on it in this instance but it became a challenge to find time to deal with other issues. I worked many extra hours for no pay.

I look back now and wonder if things could have been different.

Huge backward step

The overall effect of the changes seemed like a huge backward step. Although there was no question that some changes had been needed, including for example better ‘business management’, I believe most social services were not able to employ sufficient inspectors. One of the effects of change in the new organisational structure, with its separation from social services, was that the local ‘inspectorate’ increased its number of personnel by about 400 per cent while cutting by about two thirds, and later more, the number of visits made to homes.

Office space, IT equipment, glossy brochures, publicity and public relations blossomed. I often wondered what would have happened if only these sorts of resources had been given to social services to manage effectively?

As homes deteriorated, inspectors were busy enforcing regulations or closures. Due to a lack of legal expertise such action was hugely time consuming. Many inspectors became demoralised.

Procedures which had been virtually non-existent, often passed on by word of mouth in social services, had now become rampant. Many inspectors raised their heads above the parapet to voice the anxiety that our input was no longer enough to protect the service users, or to properly advocate for their rights. Many good inspectors left. Many more felt crushed. Worst of all, there was often no one left to speak for Julie or Tom or Paul.

I ‘TUPE’-ed through the years to the National Care Standards Commission (NCSC) and the Commission for Social Care Inspection (CSCI). I left as the organisation changed yet again to the Care Quality Commission (CQC).

But none of the changes, in my view, were as dramatic as that first transition into the ‘new world’. Each subsequent change seemed to be more of the same, with slight adjustments, greater workloads and different headed notepaper!

By the time I left, far less of my time was spent in homes. My role had become a policing one, I was not always welcome and didn’t get the same openness and cooperation from people. Sometimes staff and even residents had been primed NOT to talk to me. The effects of the cultural change were both dramatically obvious and deeply insidious. Providers often resented paying for a process that no longer offered them the same benefits.

Enlightening

On one memorable occasion I was warned that it was ‘too dangerous’ for me to enter a unit. I already had misgivings about the home and after discussion with staff I chose to enter at my own risk. The resident, who was acting out, calmed down and agreed to explain as best he could how he felt and why. It was enlightening. Would I have done this without any background experience?

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• Caring professionals (on ‘both sides of the fence’) finding
• out how impossible it was to withstand the rip-tide of huge change.
• How stress and anxiety and a blame culture numbs people’s feelings and alters their focus.
• How numbness closes down sensitivity and forestalls empathy.
• The most vulnerable people in society take the brunt of these changes.

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• Remember that most people respond better to the sun than the wind!
• Focus, on people and their rights to lead their own unthreatened lives.
• Recognise what those threats are.

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Twelve young learners from a college for students with learning disabilities have helped transform the environment and gardens at a Bulgarian orphanage.

The young people, who attend Farleigh Further Education College Frome, gave up two weeks of their summer break to give the orphanage in Berkovitsa, North West Bulgaria, a much needed makeover.

The 16 to 21-year olds, with a range of learning disabilities, helped plaster and paint walls including creating images of Mickey Mouse and a Jungle Book scene to brighten up corridors.

Twenty years ago, just after the Community Care Act, Three Cs was set up in South London to provide supported living in the community for people with learning disabilities coming out of long-stay hospitals. Since then Three Cs, standing for Control and Choice in the Community, has been at the forefront of development gaining many national marks of excellence. In 2010 it was the first national organisation to launch iPlanit, the web-based tool which gives ever y person ser ved a user-friendly computer account setting out their most important aims and tracking outcomes. Staff are accountable to people for supporting these plans.

Three Cs knows how to recognise people’s achievements. They recently celebrated their 20th anniversary, inviting staff and the people they support to the Albany in Greenwich.

Both the people served and the staff received awards recognising their achievements – the people supported for their efforts and the risks they took to achieve their dreams and the staff for going the extra mile to help them. What was memorable in the celebrations were the very strong connections between people and the agency – they weren’t just included, they owned the service.

What makes a good service? Not mounds of paper trails and beautifully designed person-centred plans but everyone living the values.

What is also important is that the drive comes from the top. Board members giving invisible support behind the scenes is vital to safeguard the organisation’s mission and to ensure its health and direction.

Chair Trevor Branch paid tribute to CEO, Jo Clare, saying that board members recognised that it was her drive and passion which permeates the organisation. Their vision for the next 20 years is, he said, “All of us living life to the full valued by our communities”. Rosemary Trustam

The Court of Appeal has overturned the government’s decision to close the Independent Living Fund. The Court found there was insufficient evidence of compliance with the public sector equality duty. This means that until or unless the government revisits the decision more than 19,000 of the most severely disabled people in this country will continue to receive support from the Fund.

The case was brought by five disabled claimants supported by the Equality and Human Rights Commission (EHRC). The Commission was seeking to clarify what is required for a public body decision-maker to show that proper consideration has been given to the impact of a proposal which affects people with a protected characteristic under equality law.

The Appeal Court judges ruled unanimously to quash the 18 December 2012 decision to shut down the Fund on the grounds that the government had failed to reflect adequately the consultation responses, “indicating that independent living might well be seriously in peril for a large number”.

The judges decided there was insufficient evidence that the ‘very grave impact’ on some of those affected was properly brought to the minister’s attention, despite officials having been clearly informed of the possible impacts on service users and local authorities.

Ministers from the DWP have decided not to appeal the decision but a spokeswoman said: “In light of the guidance provided by the Court of Appeal, ministers will be invited to make a new decision on the future of the Fund based on further advice”.

The EHRC’s Legal Director, Wendy Hewitt, said: “The Court agreed with the Commission that what was needed was consideration of the impact of the proposal on all disabled people and specifically on ILF recipients who would most obviously be adversely affected by it”.

Margaret Cohen, who worked as an assessor for the ILF for ten years, comments: “I am absolutely delighted at the Court’s decision. In addition to the shameful attacks on benefits which enable people with disabilities to live decent lives, the government was determined to abolish an efficient system which helped many to maximise independence with minimal administrative costs. Since the closure was announced recipients and their families have suffered enormous stress and now it appears that unnecessary preparatory work has been carried out to transfer funding responsibility to hardpressed local authorities.

“I fear that a new period of uncertainty about the future of the Fund may now begin. I very much hope that there will be a swift and satisfactory clarification for recipients so they can be confident about the justice of future decisions and can maintain maximum independence”. The ILF – a cut too far?

by Margaret Cohen, Community Living, Volume 25, No. 3.