InTouch
SPRING 2018
The magazine for families and supporters of United Response
Tackling disability hate crime head-on Teaming up with West Yorkshire Police to give people the tools to spot the difference between bullying and a criminal offence.
Meet the high fliers! The people being supported to follow their career ambitions
ALSO INSIDE
Reducing psychotropic meds for challenging behaviour
Life in the shadows of mental illness
Challenge yourself and support your loved one at the same time!
We have an array of challenge events designed to suit all tastes - from completing your first 5K, taking part in a skydive or being in Ride London. All the money you raise will go to support the work of United Response and you can decide if you want the money to go to a specific service or area.
Take up the challenge today! Check out our fundraising events and help us to improve the lives of people we support: www.unitedresponse.org.uk/events
For advice and support contact fundraising@unitedresponse.org.uk
CONTENTS
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NEWS
Congratulations to our marathon runners, plus news about what’s been going on locally around United Response.
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Editorial
YOUNG PEOPLE
Would you know the difference between bullying and a hate crime? Our special feature will help you know what to do should your loved one become victimised for their disability.
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EMPLOYMENT
People with autism and Asperger’s who have found success in their chosen careers share their stories.
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COMPLEX NEEDS
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MENTAL HEALTH
How we’re supporting people to come off psychotropic drugs using positive behaviour support.
One mum shares her experience of fighting to get the right support for her daughter.
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SOCIAL CALENDAR
Your guide to some of the highlights coming up in the next six months.
Since the last edition of In Touch, the UK’s post-Brexit future continues to dominate both the news and the Government’s time. It’s been challenging for us to keep up pressure for better disability rights and social care for people we support, particularly as we enter the eighth successive year of austerity measures imposed on funding. But we continue to work hard to ensure that those with learning disabilities, mental or physical support needs have the opportunity to live their lives to the full.
for the best possible care for those we support. As part of our commitment to good care, and as members of the Voluntary Organisations Disability Group (VODG), we give it our full backing. We’ve also been doing another important piece of work since the last issue. It is both heart-breaking and unacceptable for people we support to experience bullying, let alone hate crime, because of their disabilities. Recent surveys from our Young People Participation Groups showed that 80% of respondents were subjected to bullying when growing up, with many experiencing this through their twenties. As part of the support we give, we want to raise awareness of this important topic.
We’re joining a number of organisations in backing a great NHS initiative this year, known as STOMP, to help prevent the overuse of certain medicines in those with a learning disability or autism. STOMP, which stands for stopping over medication of people with a learning disability, autism or both with psychotropic medicines, is a national campaign we wholly support to improve the health and wellbeing of those in our care. People we support are more likely to be given these medicines than anyone else, because their behaviour is sometimes seen as challenging. Their use can lead to side effects including weight-gain, tiredness or even serious problems with physical health.
And we’re not stopping there. Later this year we will be launching a dedicated young person’s campaign to promote our vision of all young people with a learning disability moving into the adult world, having limitless opportunity to get involved, get ambitious and achieve. We look forward to sharing more on this with you very soon.
We firmly believe that a personcentred approach is the best and we support the STOMP initiative to strive
Tim Cooper Chief Executive
UNITED RESPONSE NEWS - THE FUN STUFF
Runners pound the streets in London Marathon on record!
Fundraising superstar: Emma Green
A huge thank you to our 18 runners who between them, raised a whopping £41,000 for United Response in April! Despite the exceptionally hot weather, they each kept on track and completed the race in brilliant time – spurred on, no doubt, by the knowledge that the money they raised would be put towards supporting people with disabilities and mental health needs across the UK.
Sir Vince Cable MP visits our Teddington service People we support put their political hats on in March, when Sir Vince Cable MP popped by our Teddington Enterprise Hub to find out what mattered most to his constituents with disabilities. Not shy about tackling the big issues, the group asked questions about employment opportunities for people with disabilities and accessibility on public transport as well as the role of specialist disability nurses in hospitals. If you want to help your friend or relative get involved in politics, United Response has some great resources to help. Check out www.everyvotecounts.org.uk
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This year, Team United Response was made up of a mixture of newbies and experienced runners, proving that anyone can take on a challenge as huge as the London Marathon if they have the drive and dedication to train, train, train! For one of our runners, Kate Knight (pictured left), the day held a particularly special place in her heart as it represented her 50th marathon – and her 16th in a row for United Response! Kate, a nurse from Croydon, only started running aged 43, and plans on running another 10
Aspiring photographer gets first work published Congratulations to George Burgess, who we support in Manchester, for having his photography published in regional lifestyle magazine, Living Edge! As a learner at our Greater Manchester Talent Match scheme, George’s ambition is to find a job where he can make the most of his photography skills. With this work experience under his belt, and a committed team of United Response job coaches behind him, let’s hope he’s one step closer to making his dream a reality.
IN TOUCH - SPRING 2018
hottest Marathon newbie: Ollie Rowan
before she hits the Big 6-0 next year. She has single-handedly raised more than £32,000 for united Response since 2002. “It was absolutely brilliant to be out there again with great support from the crowd, friends and family. I’m feeling fantastic and thrilled to be part of United Response’s fundraising team.”
Feeling inspired by o ur runners? To apply for a place in next year’s event, e mail emma.reeves@ unitedresponse .org.uk
Sue Fry
Sue is mum to Shaun, who in his forties and lives in one of our shared housing service in Bristol. Shaun has been supported by United Response for around 12 years. How would you describe Shaun? He’s very loving, has a great sense of humour and is sporty. Does Shaun ever do things that surprise you? He does! In the last five years he’s developed skills in football, badminton and basketball. He never had the opportunity to try these things before. What has been the hardest thing about being the parent of someone with disabilities? It’s never been Shaun. It’s always been the constant fight with the authorities to get the right support funded. They don’t seem to understand that the small amount of money they’re trying to cut can have absolutely catastrophic consequences for someone with a lifelong condition if it’s taken away. When did Shaun last make you laugh? It was last week when we were out for a meal. He has to be careful with his diet and staff know he’s not meant to have dessert after lunch. But when someone new is supporting him, he tries to trick them into giving him some by saying one of the others said he was allowed. It’s his cheeky sense of humour! What is your happiest memory of Shaun? Shaun’s given me 43 years of happy memories, but a highlight for me was when my other two children asked him to be involved in their wedding ceremonies and he was the ringbearer. I was proud of all three of them for that.
If you could go back in time, what would you tell your younger self? I was 24 when I had Shaun and I knew something was wrong straight away but they made me out to be a neurotic, first time mum – it was appalling. Two weeks later he had tests and I was proved right. I was worried that no one would ever love him, other than us and his family. But I was so wrong – his personality wins over everyone and has seen him through everything. I was unprepared for the genuine, two-way love. What’s the difference between good and bad support? Bad support ended up with Shaun being diagnosed with Post Traumatic Stress Disorder. He was verbally and emotionally abused when he was under the care of an NHS support provider – they’d call him awful names – and he still relives that abuse daily, arguing and defending himself. For someone on the autistic spectrum, bad support has a lifelong impact. Good support however, is what he has now. It means pressure is off of us as a family as we can totally rely on the United Response staff. We have an excellent relationship with everyone and work in partnership with them. Shaun is so happy and does more in two weeks than I’ll do in two years! How has United Response’s support changed life for Shaun? It’s transformed his life. He has a lot of struggles – he has Down’s syndrome, Autism and other things. But his support staff know him so well they help him through these. He has a full and happy life.
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UNITED RESPONSE NEWS - THE SERIOUS STUFF
Sometimes the smallest things make the biggest difference.
Since his early teens, Darren’s passion for golf has been a constant. Growing up, Darren often played at driving ranges and on putting greens without the opportunity or support to play on a full course. After moving into his Supported Living Service in February 2017, Darren’s interest in golf quickly became apparent and struck a chord with his key worker, Jim, who himself, is golf mad. The pairs’ shared interest helped build a strong relationship, with Jim keen on inviting Darren to his local golf club. Impressed with Darren’s natural swing, Jim booked the two on a full round of 18 holes. Now 34, Darren relishes the challenge of chipping away at his handicap whenever he has the time to do so. Club members and staff have been gracious, accepting and welcoming of Darren from the start. His natural skill and dedication reveals a person with real potential to benefit from and excel in the sport. This, combined
with his good, yet sometimes cheeky sense of humour, has made him a well known face around the course. “Having the opportunity to pursue a hobby which soon became a talent plays a huge part in Darren’s health and well-being,’’ says Darren’s sister, Kelly. ‘’When he plays, he has a great sense of achievement, and this has impacted on helping his confidence and self-worth. It’s part of who he is, and he’s proud to talk about his achievements.” Team leader Andrew is with Darren, looking to the future. ‘’We are currently looking at enrolling Darren into the Golf Academy at the golf club. This means Darren will become an official member of the club and can use its facilities whenever he likes and will include PGA coaching from a pro golfer, that the club will tailor to Darren’s needs.”
Has your relative had a breakthrough recently that you’d like to share? Send it to anna.carter@ unitedresponse.org.uk 6
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t United Response, we want people with learning disabilities and their families to feel that the care we provide is the best it can possibly be. Working closely with people we support and their loved ones is a core part of our mission – to ensure adults and young people with learning disabilities have the opportunity to live their lives to the full. As a result, we are firmly committed to making sure that the knowledge and expertise of family members in particular is listened to and acted upon wherever possible. That’s why we continually value your input to help us gain a clear picture of a situation or to tackle a problem, no matter how big or small, in good time. In January this year, an inquest was held into the very sad death of a young man we supported in Suffolk for 13 years. Richard Handley died in hospital in 2012 aged just 33. The coroner concluded that while United Response and other organisations involved in his care acted in good faith to assist him at all times, collectively we should have done better. Since the inquest, we have tried to be open and honest about our role in Richard’s care but also about how we’ve improved and what we’ve learned since his untimely death. Richard’s death has been the catalyst for many changes in the way we work. We’ve
IN TOUCH - SPRING 2018
Help us to improve improved our inductions, training and guidance for staff, and have bettered the way we document and manage health conditions. We’ve also furthered our policies on mental capacity and are at the start of a journey towards developing an external independent review process of our services. But we’ve also learned that we need to get better at communicating and that we must work even more closely with the families of people we support. We are very proud that more than 90% of our services are rated as ‘Good’ by the Care Quality Commission (CQC) – this is testament to the quality and dedication of our staff. But we can still improve. We are committed to making United Response a true learning organisation and want to work more collaboratively with you to ensure the same high standards are set across all our services.
With that in mind, we would also like to know when we’re getting it right. If there’s anything about the support we provide that you’ve noticed makes a big difference to your family member, please tell us to help us get it right more often.
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We are committed to making United Response a true learning organisation and want to work more collaboratively with you
that are raised and we make every effort to take swift action or prevent things from becoming a bigger issue. Our support staff understand the importance of family members’ knowledge, and will always welcome your input to help them improve.
So if you have anything you’d like to comment on about our services or the support we give, we’re ready to listen.
We actively encourage feedback on everything we do and always strive to provide the best support for people in our care. We record, listen and respond to any comments or concerns
How you can tell us what you think about our services: • • • • • • •
a one-to-one meeting/phone call with a staff member of your choice to the Chief Executive of United Response to your local Social Services, Health Authority, Local Government Ombudsman to the Care Quality Commission to the Supporting People Administrative Authority Respond to our annual Satisfaction Survey – yours will arrive in the post by the end of June Use the family feedback form on our website: unitedresponse.org.uk/forms/family-feedback
And remember, you can always call our Head Office on 020 8246 5200 or our Chief Executive Hotline on 020 8254 3135. 7
CHANGING LIVES FOR YOUNG PEOPLE
Tackling hate crime head-on F inding out someone you love is being bullied can be heart-breaking. Words of comfort go some way to ease the pain of a snide or nasty remark, but when insults become persistent or, in severe cases, turn physical, the emotional wounds left behind can last a lifetime.
For young people with learning disabilities, bullying is all too much of a common experience. A survey from our Young People Participation Groups revealed that 80% of respondents had been bullied when they were growing up and many were experiencing it still, despite being in their twenties. So raw were their memories of what happened that none felt comfortable talking about their experience publically. But when does bullying cross the legal line and become a hate crime?
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And would you or someone you love know what to do if it did?
During Disability Hate Crime week 2017, United Response met West Yorkshire Police Hate Crime Coordinator Kevin Brighton to investigate how prevalent the issue of hate crime against disabled people is. He revealed that despite believing disability hate crime to be a significant and growing problem, ambiguity around what it is, combined with anxieties around reporting it, have led to a very low rate actually being reported. In fact, they made up just 7% of all hate crimes reported nationally in 2016/17. Kevin explains why these figures are so low: ‘’On average, a victim of disability hate crime will suffer 19 times before they tell anyone. My work in schools and other areas has shown me that victims and those around them don’t know enough to help themselves when experiencing Disability Hate Crimes. And if they don’t know that they’re experiencing Disability Hate Crime, they won’t know how to report it. A lack of understanding of what constitutes Disability Hate Crime is definitely a major reason in why it’s severely underreported.
Fear of retaliation is another reason, along with victims believing that telling others about the issue will only further highlight the fact that they’re different.’’ So what can be done to help more people come forward and report their experiences? At United Response, we’re now working towards beefing up our policy, training support workers and educating the people we support to better understand what Hate Crime is and how to report it. Kevin offers some insight into the importance of using the correct terminology when reporting a Hate Crime to the police and discusses how bullying can cross over into Disability Hate Crime. ‘’We don’t like the word ‘hate’ as it’s so negative, but it is the legal definition, and we have to use it. Whilst sometimes what constitutes as bullying does fall short of being classified as a ‘hate crime’, if someone is being mistreated directly because of
IN TOUCH - SPRING 2018
their disability, then not using the correct term can diminish the importance of the report and subsequently limit the response. If the action is persistent and leads to the victim changing the way they do things, then it’s likely a hate incident has crossed over into a hate crime.” The difference between a Disability Hate Crime and a Disability Hate Incidence
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Disability Hate Crime A disability hate crime is any incident or crime which is perceived by the victim or any other person to be motivated by the person’s disability or perceived disability.
On average, a victim of disability hate crime will suffer 19 times before they tell anyone. Kevin Brighton, West Yorkshire Police
For example, Paul is walking home from school when two boys attack him. During this attack, they call Paul a ‘Spaz’ because he has a learning disability. Paul’s mother and the Police officer both perceive the crime of assault to be related to his disability. Therefore, this is a hate crime assault. Disability Hate Incident A hate incident is any non-crime incident which is perceived by the victim or any other person to be motivated by hostility or
prejudice based on a person’s disability or perceived disability. For example, Paul is walking home from school when two boys walk past him and call him a nasty name in relation to his learning disability. This is the first time they have done this. Paul tells his mother, who then calls the police. The police record this as a hate incident. Disability Hate Crime Training Working with West Yorkshire Police, we are developing a training pack for managers to deliver to their teams to help support workers across the organisation to recognise the signs of Disability Hate Crime so that they can empower victims to feel confident in reporting such incidents correctly. The pack will be launched in Leeds on the 11th June where key speakers from United Response, the Police, Stop Hate UK, and Skills for People will be discussing how we can all work together to make progress in tackling the issues surround Disability Hate Crime.
How to report Disability Hate Crime If you suspect that someone you love is a victim of Disability Hate Crime and is not in immediate danger, you can report the offence online by visiting: www.met.police.uk/true-vision-report-hate-crime Once completed, the form will be sent to the local police force from where the incident occurred. You can also support a victim to fill in an easy read version of the form by downloading it from our website: www.unitedresponse.org.uk/reporting-a-hate-crime-easy-read You should call 999 immediately if: The offender is still present
The offender is likely to return
Someone is seriously hurt or injured
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GETTING PEOPLE INTO WORK
Helping
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Kylie believes more people with autism or Asperger’s would find success in the workplace if they knew about their right to in-work support.
I’m proud to have a role that I love
Ben is a Passenger Services Agent at Newquay Airport. He landed his perfect job after being introduced to a United Response job coach over five years ago, and hasn’t looked back since. “Anyone who knows me will understand that this is a dream job,” smiles Ben, “I have been fascinated by aviation ever since I took my first trip on an airplane 16 years ago. I love everything about planes and the airport in general. I’ve got flight simulation games, model aircrafts and keep up with current aviation news.” Ben has had many different jobs and work experience, including doing an NVQ at Jamie Oliver’s restaurant in the hope to become a chef and working front of house in a pharmacy. Unfortunately, none of these roles ended in full time employment and he often had gaps of a year or two where he was unemployed and frustrated. “My Asperger’s means I can struggle when my routine is changed. In the working world, this can cause problems and sudden changes can be really tough. I need things to be explained in a way that might be different to the regular training techniques that companies use. I’m just as capable as everyone else, but getting a chance to prove that can be tough.
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Flying high: Ben at work
“Everything changed when I met Kylie, my job coach” smiles Ben, “She understood me, my interests, my skills and importantly the way to explain this to potential employers.” Ben had been busy trying to get his foot in the door of the airport for a year, completing a college course in customer services and gaining some work experience on the customer relations desk. But the role required someone who was able to respond to a wide variety of situations, questions and complaints and Ben struggled. Kylie realised he’d be better suited to a job with more structure and routine, so when a full-time position came up as a Passenger Services Agent, she supported him to apply – and he’s not looked back since!
“The benefit of having a job coach is that they can help iron out any niggling concerns between the employer and the employee before they create significant issues,” says Kylie, “When Ben first started, I offered to go in and chat to his new colleagues, giving them a leaflet about Asperger’s and some of the common ways it affects people, as well as information about how it affects Ben specifically and some of his behaviours. This immediately helped his colleagues understand why Ben did certain things, and be a bit more open-minded. From that point on, Ben has gone on to flourish without any more involvement from me – but he knows I’m always here should he need me.” “I wouldn’t change my job for anything in the world.” Says Ben, “The people I have met at Newquay Airport are friends for life.”
“I currently work 3 days on and 3 days off, doing a 10 hour 45 minute shift each day,” says Ben, “This suits my work/life balance perfectly. It’s a great feeling when my pay cheque comes through and I am proud to be in a role that I love, in a place that I love, surrounded by people that I love. “I show passengers where to go and assist them with their luggage. This is great as I get to interact with lots of different people and am always improving my social skills. I also help to man the information and ticket desk.”
ing at the
Embracing his skills: Peter programm
IN TOUCH - SPRING 2018
careers take off
H
aving a career you love, rather than just a job you fell into, is the kind of ambition many of us aspire to. But for people with autism or Asperger’s Syndrome – already fighting for their spot on the job ladder – are such high career hopes just wishful thinking? Two people we supported to forge careers in their dream industries tell us how they broke barriers.
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I’d never had a truly professional role before this
Peter, from Manchester, is a Software Development Apprentice at the BBC, a job he started in September 2017 after six months on Greater Manchester Talent Match. As part of his role, Peter acts as a rep for the BBC, visiting high schools to talk about his role and the apprenticeship programme. Peter, who has Asperger’s, applied to the apprenticeship after being sent a link to the Opportunities Hub by his Talent Coach, Amy Stott from United Response. Before meeting Amy, Peter had been unemployed for over a year. “I’d never really had a true professional role before this one.” says Peter, “I think it’s made me more emotionally mature.”
BBC
Peter says that although many people have told him that it’s obvious that he’s a very talented programmer, he had been unable to find work in the area:
“I wasn’t being given the opportunity by technical companies because I haven’t got a degree. I found it difficult to get even an interview.” Peter is very complimentary to the BBC for their support, particularly around his Asperger Syndrome, a type of autism. He explains, “Early in my role, it was explained to me that a few other members of the team were concerned by me not making eye contact, worried that I was not concentrating on what they were saying. So Amy offered the manager advice around my condition and how best to support me.” With a better understanding of Peter, the role continued much more smoothly, which is why job coaches can play such an important part in helping people with autism or Asperger’s find success in their new jobs. With 43 people currently being supported to find work on the Talent Match Programme, we’re sure there will be plenty more stories like Peter’s over the next twelve months!
Ali Bishop, United Response’s Head of Employment, explains how we’re helping people overcome barriers to work: We all know the saying; “If you’ve met one person with autism, you’ve met one person with autism.” And this is very much true when supporting someone with autism towards work. Our supported employment services work with every individual by getting to know them before we start the process of matching them with a job. Many of the people referred to us also struggle with anxiety and depression, so our job coaches spend a lot of time building their confidence through carrying out small tasks, going out for a coffee together, or - for some - helping them join our team of disability consultants. Sometimes we might signpost to other organisations for specific support but in all cases we listen, and over time build trust. We set up work tasters in an area they are interested in and then longer placements. Each employer found needs to fit the needs and preferences of each job hunter. Supported by the job coach throughout the process, individuals are able to build skills, experience and most importantly - confidence. Eventually this leads to a work trial for a paid job where they and the employer continue to be supported. This individual approach ensures everyone has the best chance of gaining paid work, and work that they will keep.
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SPECIALIST AREA: COMPLEX NEEDS
Reviewing the use of psychotropic drugs
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tatistics from Public Health England show that every day, between 30,000 and 35,000 adults with learning disabilities are using psychotropic drugs - despite not having the health condition they are designed for.
Reasons for being prescribed these drugs vary from managing psychosis, sleep problems, anxiety or epilepsy to helping control behaviour that can be described as ‘challenging’. But in recent years, questions have been raised about whether this is right, and whether any benefits of being on such strong medications – often throughout a large portion of someone’s life – may actually be outweighed by the side-effects. Being on too high a dosage, for too long and for the wrong reasons, can lead to complications including weight gain, mental grogginess
and physical health problems. For many of the people we support, psychotropic medication is used rightly and successfully as a way of helping them to stay well and safe. But for others – particularly those who take medication for reasons predominantly linked to managing challenging behaviour – could there be other, less medicinal, ways of solving this issue? John Ockenden, our Practice Development Co-ordinator, believes there is. “There is little evidence that psychotropic medication does anything for people whose behaviour is challenging, other than to sedate them. If there was no alternative, then that might be OK, but Positive Behaviour Support (PBS) is effective in reducing challenging behaviour as well as improving the quality of life of everyone involved. PBS focuses on looking for and changing whatever is causing the challenging behaviour: invariably this involves providing more individual and specific help to the person before they need to engage in challenging behaviour to get what they need. Now we’re signed up to STOMP, United Response is aiming to try and reduce the use of psychotropic
medication with everyone we support who is receiving it because of challenging behaviour; though always cautiously, and in partnership with the medical professionals who have prescribed it.
Reducing medication in action Ivor is 73 and like so many of the older people we support with learning disabilities, he spent much of his life in institutions, which is where he first began being prescribed psychotropic drugs. United Response started supporting him almost 30 years ago, and he continued to be given these drugs as part of his support plan. But then – four years ago – a regular meeting between Ivor’s support staff and his psychiatrist prompted a change of direction never previously considered. “The psychiatrist told us that new research was showing a link between the long-term use of psychotropic medication and organ disease – particularly in older patients, “ explains Pascale Carpenter, Deputy Manager. “Naturally, none of us wanted to put Ivor’s physical health at risk. And actually this made us think about whether it was right for him to stay
The Challenging Behaviour Foundation has a useful information guide for families of people www.thecbf.org.uk/ and download a free copy. 12
IN TOUCH - SPRING 2018 on the medication even if it wasn’t causing him harm. We’d never known Ivor without his medication, so it was a little like stepping into the unknown, but we all agreed it would be worth trying to reduce his dosage in a very carefully monitored and controlled way.” Ivor and his staff went home and the process of reducing his medication began. But coming off a drug that had been in his body for most of his adult life was not an easy process. As the fogginess of the medication began to lift, a new, more assertive Ivor began to appear. “Ivor has always had ‘colourful’ language, shall we say!” smiles Pascale, “But suddenly his speech became a lot more sophisticated and he became a lot more aware of what was going on around him. If he heard staff mention his name in a conversation, he would now want to know what was being said. He also started asking more questions generally. Now, these are all positive changes from the perspective of the ‘real’ Ivor slowly coming out from the fog, but with his newfound clarity, there did come a few changes which we found disconcerting. As he was becoming more independent, wanting to do more things for himself, he was no longer accepting help willingly from his support staff. This was understandable, but in reality Ivor couldn’t do everything without support, so refusing help meant that his hygiene and
Out of the fog: Ivor, right, and his activity co-ordinator, Keith.
cleanliness levels went down a lot.” At this point, doubts about whether Ivor was better off before started to be raised by much of his support team. But Pascale knew that stumbling blocks like this were to be expected, and the way of overcoming them was not to run back to the safety of the medication, but to change the way they supported Ivor to engage with these more practical tasks. One way of doing this was to use lots of praise and motivational language and incorporate favoured activities into the tasks. “An example of this would be how we encouraged Ivor to shave when his beard was getting a bit unwieldy,” explains Pascale, “He is a big collector, and one of the things he collects is dolls. So we would role play and ask Ivor to show the doll how to shave, making it into a game. Other times we would use the doll to demonstrate how and where he needed to wash, so that he could do it himself, but still do it properly. On other occasions, we would adjust the demands we were making of Ivor, to a level he could cope with. If Ivor needed a bath but was refusing, we would fill up the basin with soapy water and pass him a flannel, so he could do the actual washing himself.” It’s now coming up to three years since Ivor first started coming off of psychotropic drugs, and today, he is officially drug-free. “It was a long and sometimes difficult journey,” says Pascale, “But it was worth it to see the real Ivor freed from the fog of medication. He has become more confident too. In the past, trips to the doctors made him extremely fretful – we think he had witnessed or had a lot of injections in the institution. But now he goes without any problems – he sees it as being brave.”
BEST PRACTICE John Ockenden, from our Practice Development Team, explains our commitment to STOMP “Stopping Over-Medication of People with a Learning Disability, Autism or Both” is a 3 year campaign focussing on improving people’s quality of life by ensuring they only receive psychotropic medication for the right reasons and in the right dosage. United Response have signed the STOMP pledge for Social Care, and we will be using the STOMP selfassessment and planning tool to identify the practical steps that can be taken to enable people we support and staff to reduce the amount of inappropriate psychotropic medication being prescribed. We are committed to reporting our progress against the eight components of the pledge, ranging from commitments to closer working with families and other professionals, through better record keeping, to actively promoting better approaches like Active Support and Positive Behaviour Support. Sometimes people are on psychotropic medication because they’re not being supported well enough, and it’s our job to change that. You can find out more about it here www.vodg.org.uk/campaigns/ stompcampaign/ We will tell you more about what we’re doing in future editions.
who are being prescribed psychotropic medication for challenging behaviour. Find it at: 13
OVERCOMING BARRIERS WITH PEOPLE WITH MENTAL HEALTH NEEDS
W
orrying and being a parent go hand in hand. When children are small, we fret over scraped knees and making friends. A plaster here, a hug better there: in the eyes of our children, we hold an almost superhero-like power to make things better – so what does it feel like when we can’t?
Living in the shadow of m For parents Carol and Richard, not being able to fix things for their daughter, Ashley – who has struggled with chronic mental illness since the age of 5 – left them feeling powerless and frustrated throughout much of her life. In a story that’s achingly familiar to many of United Response’s families, they’ve battled their way through the social care system for 36 years, navigating a plethora of forms, assessments and funding applications, to get the help their daughter needs. Here, mum Carol shares her families’ experience of living in the shadow of mental illness, and explains why for the first time in decades, she sees a brighter future for Ashley. “This week, my daughter walked all the way to the Community Network, United Response’s drop in day
service, by herself,” smiles Carol, “And today, she spent the morning volunteering. There was a time she’d never speak to strangers. It’s a big step and one we’ve waited a long time for.” Carol credits the recent changes in Ashley to the ongoing success of the emotional, social and supported living support she’s received over the last four years from United Response. But getting to this stage has been a long and arduous trek, starting when Ashley was a little girl. “We first realised Ashley was having problems when she started school,” remembers Carol, “She was getting frustrated and lashing out at other kids. We saw a child psychiatrist but felt fobbed off, with her behaviour explained away as simple sibling jealousy over her baby brother. Of
course, it wasn’t that. Over time, her behaviour escalated, until one weekend, a letter came through the door from her school telling us she was being excluded at age 6.” The news that Ashley was to be expelled caused havoc for Carol and Richard. They managed to scramble together places for Ashley and her siblings at a nearby Catholic school. But although the teachers there were compassionate with Ashley, her behaviour was still erratic, and visits to the child psychiatrist became more and more frequent. By the time she reached secondary school, it became clear she could no longer cope in a mainstream environment. “She lasted four days in senior school before the deputy head teacher called us and told us she was acting strangely and all of the other pupils were laughing at her,” says Carol, “At this point we still didn’t know what was wrong. The child psychiatrist was useless and kept trying to link her behaviour back to us – arguing it was the way we were doing things, even suggesting our marriage might be causing it. “By this point we were feeling quite desperate. Ashley was one of three children and it was horrible watching her struggle so much. Her brother didn’t understood what we meant
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IN TOUCH - SPRING 2018 when we would told him his sister wasn’t well - he’d be looking for a broken leg. When people don’t see a physical sign of illness, they just see a person acting strangely.” Ashley spent her teenage years in and out of a mental health hospital, where she was able to
living independently 14 years ago. Whilst she had got better at managing her illness and spotting the tale-tell signs of her symptoms, she had also developed a heightened sense of anxiety about doing things on her own and was very dependent on her family to get out and about. When a place became available at
mental health continue with her education in a less pressured environment. But the support she received continued to be inadequate, from early problems with overmedication to the continued failure to find out what was causing her distressing behaviour. In fact, it wasn’t until Ashley was 16 that she finally got diagnosed with Bipolar Disorder. “Getting that diagnosis was a battle,” sighs Carol, “We had tried to get her seen by the psychiatrist when she was at primary school every time her symptoms were at their worst, and every time there was a reason they couldn’t see her in time. We had spent so much of Ashley’s life not being listened to by this point – and again for the next decade when it came to fighting for the right funding, and the right amount of support she needs and deserves. It’s been one of our biggest frustrations. But today – over 15 years since that day – I believe that has finally changed. Ever since United Response came into Ashley’s life we have been heard – and importantly, so has Ashley.” Ashley and her parents first came across United Response when they joined the choir at the Community Network: a drop in centre in Kent. At this point, Ashley was still living at home after a failed attempt at
for funding. It sometimes seems like those who decide these matters have no understanding whatsoever of how Ashley’s mental illness affects her – if she does well for a few months, it’s used as an excuse to cut her hours, which in the long-term, actually leads to her getting so anxious about being unable to cope that she becomes ill again. But when I look to the future, I know I want Ashley
a mum’s story
a nearby supported living service, it was Ashley who broached the subject of moving out again to her mum and dad. “By this point we knew a lot of the Network staff and had seen first-hand how they supported people,” says Carol, “I remember thinking, ‘maybe, just maybe, this time it will work’. For the first time in a while, we had hope.” United Response area manager, Martine Norton, worked with Ashley and her parents and agreed on a phased moving process, to avoid putting any pressure on Ashley and triggering her anxiety. Over a period of 12 months, Ashley got to know the support staff, and started spending time at her new flat. First, she went with Carol, staying for one night and then returning home. Gradually, when she felt ready, she stayed a second night, and then from there, started spending time there on her own. Eventually, she made the final transition and – and despite the inevitable periods of illness - she hasn’t looked back since. “Ashley is growing in confidence all the time,” smiles Carol, “She goes swimming and to the gym with her support workers, she plays Bingo and she sings in the Network’s community choir, which Richard and I are also part of. There are still the same old fights
to stay with United Response. I trust them completely to always have her best interests at heart. “For Richard and I, knowing that she’s being well supported has given us the peace of mind and freedom to enjoy our retirement. We go abroad together now, whereas in the past we could only ever go as far as France because of Ashley’s anxiety about flying. United Response really have changed everything for us.”
ASHLEY’S PERSPECTIVE Living in my flat works well for me because the staff are always nearby and that makes me feel safe. I enjoyed furnishing my own flat and buying kitchen equipment. I get on well with the other people in the flats too – the person next door pops in to play Ludo with me, watch TV and have a cup of tea, which is nice. I have the choice to be on my own or see people. I wash up, wash my clothes and have support to make dinner. My support staff are helpful and very understanding. I wouldn’t be able to go out and do things if I didn’t have them to go with me. It’s very important to me that they’re here.
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SOCIAL CALENDAR
The Autism Show 15th-16th June 22nd-23rd June London Birmingham
29th-30th June Manchester
This is the national event for autism, offering more information, help and advice on autism (including Asperger syndrome) than anywhere else in the UK. Just some of this year’s highlights include talks from Lorraine Petersen, Education Consultant Specialising in SEND and Previously Chief Executive of NASEN; Lauri Love, Computer Scientist, Political Activist and Autistic Individual; and actors Travis Smith and Lucy Gaskell who play Mark and his mum Sophie in the BBC’s The A Word. Book tickets at: http://autismshow.co.uk
Chase Park Festival 18th August Gateshead, Saltwell Park 12.00 - 21.00 The North East’s Festival For Everyone returns this summer, promising an accessible and inclusive day of music and fun for all the family. This pioneering event tackles many of the social and cultural issues faced by people with disability or long-term illness. For more information, go to www.chaseparkfestival.co.uk
ROC 5K Charity Fun Run 26th June 18.30 - 21.30 Lemon Quay, Truro The annual ROC 5K charity fun run celebrates its 5th year this Summer. All funds raised will be going towards ROC Wellbeing Social Club in Truro as well as IT equipment for the Chapel, Wheal Busy, near Chasewater. ROC became part of United Response last year, so why not show your support and either sign up, or just go along to cheer the runners on? For more info, visit www.unitedresponse.org.uk/ roc5k2018
Lost Voice Guy June-December Nationwide Award-winning comedian, Lee Ridley, hits theatres across the UK over the next six months. Known by his stage name, Lost Voice Guy, Lee is the first stand up comedian to use a communication aid - proving that not being able to talk doesn’t mean you have nothing to say.
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Check out tour dates near you at: www.lostvoiceguy.com