InTouch - Winter 2019 by United Response

InTouch

WINTER 2019

The magazine for families and supporters of United Response

Meet the experts How our learning disability and autism-awareness training is helping businesses to think differently

Inside House 48 Our resource centre providing a vital lifeline for people with mental health needs in Bognor

ALSO INSIDE

United Response launches online cookery tutorials

Short Breaks programme a success in Manchester

Prudential RideLondon-Surrey Sunday 4th August 2019

Your chance to cycle 100 traffic-free miles through London and Surrey and raise funds to support young people and adults with a range of disabilities and mental health needs. Follow the route made famous by the world’s best cyclists during the 2012 Olympic Games.

Sponsorship target

£500 Entry fee

£20

Our riders get: • Free cycling jersey • Our cycling pack with training and nutrition tips • Fundraising tips and advice • A cheering pack • United Response cheering stations on the day

www.unitedresponse.org.uk/ridelondon or events@unitedresponse.org.uk or 020 8879 4987

Cycling Toolkit

Join our fund raising fami ly Registered charity

no. 265249

CONTENTS

NEWS

People we support have been getting up close and personal with animals in Mansfield and winning awards in Devon and Cornwall. Elsewhere, our ROC Wellbeing service launches online cookery tutorials.

YOUNG PEOPLE

We held our first shortbreaks programme for young people in Manchester this Summer - find out how it made a difference to the people who took part and their families.

YOUNG PEOPLE

How our first Short Breaks programme for young people has left a positive impact on the families who took part.

EMPLOYMENT

Meet UR Consultants, our team of specialists giving advice and support to businesses up and down the country on how to become more learning disability and autism-aware.

COMPLEX NEEDS

MENTAL HEALTH

United Response specialises in supporting people with more than one health condition. Here’s one example of how we’re helping one man change his life in Cornwall.

We visit House 48 - our mental health service in Bognor - and find out how they’re giving people with mental health needs a reason to get out of bed in the morning.

SOCIAL CALENDAR

Your guide to some of the highlights coming up in the next six months.

Editorial 2018 was another incredibly busy year at United Response. The past months since our last issue have thrown up all too familiar challenges for social care but there have also been plenty of breaks in the clouds both within and outside the organisation. In July, we welcomed Malcolm McCaig as our new Chair (see page 7). Malcolm replaced Maurice Rumbold, who retired last summer and stepped down from the role after a decade. We were delighted Malcolm chose to join United Response and look forward to working with him at what is an undoubtedly difficult but incredibly exciting time for our sector. He will be a major asset to our organisation. We continue to lobby Government on a number of critical issues affecting the sector, our staff and the people we support, including the ongoing uncertainty surrounding sleep-in shifts. We welcomed Government’s recent announcement of a consultation to improve learning disability training and awareness, which takes on board the findings of the recent Learning Disabilities Mortality Review (LeDeR). This is a long-overdue commitment to tackling the issue and we look forward to hearing about tangible actions for healthcare professionals to embed without further delay. We were pleased that the CQC’s State of Care report described how the

overall quality of UK health and social care has largely been maintained in the face of significant challenges. The social care sector is one that we should be proud of. However, we still have grave concerns about the financial fragility of vital services and eagerly await sustainable solutions from Government in its long-delayed Green Paper. Our new research into disability hate crimes in the autumn revealed some deeply disturbing figures but threw into the spotlight our vital work with West Yorkshire Police in tackling these mindless incidents. We obtained data from 32 regional police forces in England and Wales, which collectively reported that recorded disability hate crimes have surged by a third in the past year. We’re committed to reducing these crimes and empowering victims to speak out, and will soon be rolling out our joint training and guidance with West Yorkshire Police across the country. I hope you enjoy this issue. We’ve got updates on our Short Breaks project, a mental health service in Bognor and our role in supporting those with multiple and complex health conditions.

Tim Cooper Chief Executive

WIN £50 IN VOUCHERS! Has your relative ever been treated unfairly because of their learning disability or autism? We’re running a campaign around public attitudes on disability. Share your experiences, and your next trip to the highstreet could be on us! Complete our quick survey at: http://bit.ly/UR-survey-2019

UNITED RESPONSE NEWS - THE FUN STUFF

Having a paw-some time! People we support in Mansfield have been brushing up on their animal know-how, thanks to a whopping £9,979 grant from the Big Lottery Fund. The money has funded three, 8-week holistic animal therapy courses, designed to give people with physical and learning disabilities the skills, confidence and ability to work with and care for animals. Throughout each course – run by Entwined Education - they’ll enjoy close encounters with horses, sheep, pigs and dogs, and develop a practical understanding of animal

care, including first aid, land management and animal welfare. Job coach Simon Arnold has been supporting the group on the first course and believes it’s offering a once-in-a-lifetime opportunity. “This is a very unique course and absolutely brilliant for the people we support.” He says, “Animal therapy and interacting with animals reduces stress and anxiety and will brighten up the lives of some of the most vulnerable people in society.” As well as being an instant moodbrightener, the course acts as a fantastic first step for people with learning disabilities who dream of working with animals in the future. Watch this space!

Celebrating the dream achievers at the annua Staff and people we support from Devon and Cornwall were bursting with pride last October, as they gathered for the 5th ROC Awards ceremony. These local awards offer an opportunity to acknowledge the inspiring success stories of people we support in the area, as well as give special thanks to just some of the staff who’ve made a significant impact on the lives of people with learning disabilities in 2018. Nominees for the awards, which include categories such as ‘Helping Others’, ‘Learning New Skills’ and ‘Community’, are made by staff, people we support and their friends and family. Kate Conroy (left), won this year’s Impact Award for her exceptional work placing people with especially

IN TOUCH - WINTER 2019

Brenda Whitehead

Brenda is foster mum to Adam*, a 15-year-old boy who took part in our Short Breaks programme in Manchester. How long have you fostered Adam? On and off for seven years. What was the last thing he did that made you really proud? When he got his Educational Achievement Award at school – his teacher put him forward for it. It’s just a certificate but it means everything to him. He’s come on so much. He absolutely loved the Short Breaks programme with United Response – it made him so much more independent.

mers and al ROC Awards complex and challenging behaviour into new or existing services. “I was delighted to get the award, it felt really nice to get recognised,”said Kate. “I get really attached to the people we’re supporting and it can be a steep learning curve to understand their needs and recruit the right people.” Other winners on the night included teenager Luke Manning, who won the Dare to Dream Award. He was recognised for fulfilling so many of his goals, including living independently, finding a job in Wetherspoons and learning how to manage his money. Well done to Kate, Luke and all of the other winners of the 2018 ROC Awards!

What is the hardest thing about fostering a young person with learning disabilities? The challenging behaviour when they arrive, as you need time to get to know them and learn how to manage it. Adam has lots of challenging behaviour: one is around eating inedible things. He will lick soap, spray body spray directly into his mouth, eat toothpaste from the tube and put unsanitary things in his mouth. We are managing that by keeping toiletries out of reach and educating him about how this could make him sick. What is the best thing? When you find a way of managing their challenging behaviour that works! Adam gets very frustrated and has angry outbursts where he’ll wreck his room, throw the contents of his wardrobe on the floor, knock things over, scream and shout. He used to have these every two days but this year, he’s only had one. He’s learnt that I won’t react, no matter how much he wants me to, and that if he makes a mess, he’s got to tidy it up himself. We’ve tried to reduce the things we do that we know lead to him getting

so upset. For example, school holidays used to be a nightmare because he needs structure. If I told him what we had planned for tomorrow and it didn’t happen, or the timings slipped, it would cause an outburst – so now, we are careful never to give him details of what we have planned until the morning, and are flexible with times. What makes you both laugh? He has had a hearing problem all his life which only got diagnosed last year. We both giggle when he says ‘chicken and chips’ instead of ‘Citizenship’. What is good support? Good support is about encouragement, praise and empowering people to manage by themselves. I see a lot of bad support where challenging behaviour is just accepted and no one bothers trying to change it. I teach Adam life skills, helping in the house, shopping - and he can cook basic things. Now, when my grandchildren stay, he tells them ‘Don’t bother Brenda about doing your breakfast, I can do it!’ He’s happy to take control. If you were prime minister for the day, what would you do first? I’d make more support available. As soon as kids turn 18, nobody cares. They no longer come under children’s services so all support just stops. Where do you hope Adam will be in 10 years’ time? I hope he’ll have a job and be living independently. He wants to be a hospital porter so he can tell people where to go and not to be scared. *Name has been changed

UNITED RESPONSE NEWS - THE SERIOUS STUFF

United Response launches online cooking tutorials

Organisational restructure We regularly review our divisional and operational structures to ensure we are able to lead and deliver our services effectively and ensure managers and their teams have access to the skills and resources they need. The aim of these reviews is for us to continue to deliver high quality support to people and design structures and roles to support this strategy. To this end, from September 2018 we have re-organised our divisional structure.

United Response launched an online series of cooking tutorials in December, aiming to encourage people with learning disabilities to cook for themselves and eat more healthily. The CookABILITY series was filmed at United Response’s ROC Wellbeing service in Devon, and includes easy-to-understand recipes including spaghetti bolognese, chilli con carne and Quorn paella. Alan Tilley, Area Manager for ROC Wellbeing, tells us why helping people with learning disabilities to get more involved in what they eat is so important:

“Obesity is a ticking time bomb which will hit people with learning disabilities particularly hard if we fail to take decisive intervention and don’t give people control over what they eat. “In our experience, people with learning disabilities can struggle to eat a balanced diet. Cooking a meal from scratch can seem daunting and so people end up instead eating ready meals or fast food high in fat, sugar and calories. In order to tackle this major health problem, we have to be bold and show people how to cook with confidence.” One of the star cooks in the debut video is 26-year-old Stephen Jenkins from Paignton, in Devon. “The food tasted delicious and it wasn’t really that hard to make.” he said, “Eating was my favourite part though!” You can watch the videos on the United Response YouTube channel.

Your feedback matters United Response encourages feedback on everything we do, and we are always trying to improve the way we do things. If you have a comment, concern or complaint, you can tell us in the following ways: • • • • •

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

And remember, you can always call our Head Office on 020 8246 5200 or our Chief Executive Hotline on 020 8254 3135.

North Division Covering: Cumbria Fylde Lancashire Manchester Newcastle North Tyneside South Tyneside Darlington

Durham York North Yorkshire Divisional Director: Julia Casserly, 07973 361 859 julia.casserly@ unitedresponse.org.uk

East Division Covering: Derwent Derbyshire Nottinghamshire Kent Greater London Oxfordshire Buckinghamshire Suffolk

South West Division Covering: Warwickshire Merseyside Wiltshire Herefordshire Worcestershire Gloucestershire Bristol

BANES Somerset Cornwall Truro West Sussex Devon Hampshire

Divisional Director: Mike Crowhurst 07860 734 639 mike.crowhurst@ unitedresponse.org.uk

Divisional Director: Tim Jones 07970 579 143 tim.jones@ unitedresponse.org.uk.

United Response appoints first new Chair in ten years In Summer 2018, Malcolm McCaig joined United Response as our new Chair. With an outstanding breadth of experience and a wealth of technical knowledge, Malcolm has a substantial track record of working in executive, chair and board roles at major

organisations. A certified management consultant and currently UK chair of employee benefits provider Unum, his vast career spans the accountancy, banking, insurance and charity sectors. Please join us in welcoming him to the team!

CHANGING LIVES FOR YOUNG PEOPLE

Ambitious Manchester Being a parent is a full-time job. Whilst there’s no doubt that life as mum or dad is bursting with beautiful, funny and heart-warming moments, wouldn’t it be nice if sometimes – just once in a while – there was a pause switch? A chance to reacquaint yourself with that long-forgotten phrase ‘me time’?

8 8

In August 2018, United Response gave families exactly that, as we launched our first ever Short Breaks programme for young people, called Ambitious Manchester. Designed from the outset to be more than your typical activity break, it set out to do three things: to educate, to connect and to inspire. Of course we wanted it to be fun – and lots of it! But we also wanted people to learn some skills that would help them on their journey to adulthood long after our two weeks together were over. In a programme peppered with team-building and creative activities, including kayaking and a day creating and then hosting their own live radio show, we also built in practical workshops on job-hunting, travel training and budgeting. Tracey Fletcher, United Response Business Development Co-ordinator in the North, explains why it was so important to get the balance right: “At the start of the year, I went to an exhibition for parents of children with learning disabilities and met people who were feeling frantic with worry about the

IN TOUCH - WINTER 2019

ACTIVITIES INCLUDED: Raft building Kayaking Bowling Travel training DJ presenting Job coaching Life skills

future.” She explains, “There is a huge gap between child and adult services and a lot of families have no idea what is out there, or that they have to start thinking about it from 14. We hoped that as well as offering a bit of respite to the families, this short-break programme would also act as a positive introduction into what that transition might involve – and just how much potential their children have hidden inside them just waiting to be coaxed out.” “It’s natural for parents to worry and feel over-protective of their children – especially when they have disabilities. It’s easy to fall into a pattern of thinking about what they can’t do, or wouldn’t like to do, but children can be very different people when they’re away from their parents – often more confident and willing to try new things.” One person who can relate to this is mum Geraldine Hills. Before taking part in Ambitious Manchester, she described her son Sam as someone who ‘finds it difficult to meet people socially’. But during the fortnight he spent taking part in our shortbreaks programme, she noticed a dramatic change in his behaviour. “He’s been a little bit isolated and I’ve tried, but he’s 17, I’m his mum – I’m not cool!” says Geraldine, “When you came along and he started this programme, all of a sudden he’s talking about other people of his age and what they’re going to do together. Not only that, he’s done some travel training - and we’ve just moved to the city centre - so he’s been helped to get to know it. His confidence is unbelievable, and he’s made friends, and learnt employability and life skills.” Sam himself agrees that the programme has helped boost his confidence and encouraged him to think more positively about his future.

“

“Before I was mostly at home in my room not really doing anything.” He explains “I’ve had a lot of fun on this and I’ve made friends as well. We planned things every day and went shopping. And I learnt some sign language. We went into town and asked about jobs and how we would apply

ble, and he’s made His confidence is unbelieva ability and life skills.” friends, and learnt employ

Mum, Geraldine Hills

for them - I don’t think I would have done that three weeks ago. I want to be more independent.” Bringing people like Sam out of their shell in such a short space of time was a challenge for all of the team working on Ambitious Manchester, but one they had prepared for when planning the programme. Efforts were made to match each young person with a support worker with similar interests, making it easier and more natural for them to build a trusting bond. The daily schedules were also designed to be flexible, giving the group control over things like how they chose to travel, when and where they had lunch and what shops they went to. “We felt it was really important that the young people coming along felt empowered and excited about what they were doing each day so we gave them lots of choices.” explains Team Manager, Amanda Kitsull. “They were each allocated a key worker at the start who had already been completely briefed on everything about them and either shared a common interest, or had experience in an area relevant to their support needs. One of our support workers is doing a music degree, so he was placed with a young man who was learning the drums. Another was matched with a small group of young people who had communication difficulties, as she had a lot of knowledge around that.” For all of the young people taking part, the support they received and the groups they joined for different activities were re-evaluated daily, based on how they were coping and allowing for the natural friendships being formed. This flexibility meant the programme was always meeting the needs of each individual person. “The feedback we’ve had since finishing the programme has proved that this person-centred way of working, along with the effective three-way communication between parents, young people and the support workers, was what made this Short Break programme a brilliant experience for everyone. The young people loved it, the support workers really felt their impact and the parents could see immediate growth in their children when they returned home.” The result? Eight self-conscious and shy young people walked in. Eight confident and ambitious young adults walked out. Mum Geraldine sums things up: “It felt to me like you got it. You got Sam. I felt like I could trust you.”

GETTING PEOPLE INTO WORK

Sarah

Beks

Rahman

Finding and keeping a job can be challenging when you have a learning disability. Every year, United Response’s supported employment services help hundreds of hopeful job seekers learn the skills they need to take their first steps into the working world. From teaching the basics they need to get off the starting post - such as CV-shaping and interview techniques - to offering on-the-job support, we thrive on helping people prove to employers – and to themselves – exactly how much they’re capable of. We believe that one of the best ways to convince employers to open their minds and their doors to people with learning disabilities or autism, is to do a little bit of myth-busting, faceto-face. That’s why in 2005, we set up one of our longest running and most successful social enterprises, UR Consultants. This specialist team,

Meet the experts comprised of United Response job coaches and people we support, deliver tailored autism and learning disability awareness training to companies up and down the country. They’re credibility as experts in their field has been solidified by their work with the NHS, local councils, the Government, the Job Centre, police, transport networks and schools – to name but a few. So what is it that makes UR Consultants’ training so invaluable? And can it really change the way employers view hiring people with learning disabilities or autism on a larger scale? We caught up with Alicia Hurn, team leader at our Greater Manchester branch of UR Consultants, along with a few of the consultants themselves, to find out how they’re making a difference. Tell us a bit about what makes your learning disability and

autism-awareness training so unique. Alicia: The key thing about the training that makes it different is that it is delivered with people with learning disabilities and autism. They add the meat to the bones of the topic – they have lived experience and they can share what has happened to them in the past and how it felt. This is so much more effective than just doing a presentation as it gives delegates the chance to ask questions and get a real understanding of the topic, and breaks down a lot of the barriers people may have in their minds about what people with autism or learning disabilities can do, or how they might communicate. Sarah: We help employers to understand the needs of employees without embarrassment.

IN TOUCH - WINTER 2019 Beks: We highlight the positives that an autistic person can bring to the workplace, such as an alternative perspective. And hopefully, we’re helping change the public perception of autism. What are the common misconceptions employers have about people with autism or learning disabilities? Sarah: People are often surprised as to the complexity of Autistic Spectrum Disorder experiences and how limiting common stereotypes are. For example, they may assume people with autism have sensitivity to all noises instead of certain noises. Or problems with all lighting when it’s only blue spectrum lighting. Beks: I’ve noticed that at the start of our training, people seem to be taken back by how ‘normal’ consultants appear. Rahman: Employers think people with disabilities could be a threat to their business, because they misunderstand what people can do. They tend to be very business-minded. Alicia: Exactly. A lot of employers are scared about employing people with learning disabilities or autism. They think they will be legally obliged to make significant changes

to infrastructure or systems, or that they will have caring responsibilities. They worry about communication what if they are not understood or the person doesn’t respond? In reality, the reasonable adjustments they might need to make are very small and would actually benefit all kinds of employees, not just those with learning disabilities or autism. Tell us about some of the reasonable adjustments companies can make. Sarah: Not many companies advertise if they are “disability confident” work spaces – this would be a first step. Alicia: We talk about the importance of scheduling interviews at quieter times of day, when public transport is likely to be less busy and therefore much more manageable for people with autism, who can find the noise and distractions on public transport quite overwhelming. Often it’s only the smallest things people need to change to make the legal reasonable adjustment. One of the exercises we do on the course is about eye contact: we ask people to hold eye contact with each other for a full minute so they can feel how awkward and difficult that can be. This can then be used to demonstrate that for many people with autism, eye contact in general can be very unsettling, and that by avoiding eye contact, they are not necessarily being

to deliver Would you like UR Consultants areness autism or learning-disability aw training at your workplace? Hurn on To make an enquiry, contact Alicia alicia.hurn@unitedresponse.org.uk ve, As well as the training detailed abo or location UR Consultants also offer building ise on disability audits, where they can adv and seating ts pac factors like lighting, sensory-im Peer ut arrangements. You can also ask abo t group for Mentoring, a post-diagnosis suppor ism and their people recently diagnosed with aut y. families, or their Recovery Academ

rude. Or in the case of our work with the police, an indication that they are lying! With the police, we also talked about how many people with autism might respond to being touched in a way that may appear to be like avoiding arrest or non-compliance, but that isn’t necessarily the case at all. These are all things that will help them change the way they engage with people with autism in the future. What is your one take-away bit of advice for employers who want to improve the way they communicate and engage with people with learning disabilities or autism? Rahman: Remember that even though you’re not experts, you can offer support to people in the workplace by being more understanding and empathetic. Beks: Don’t discriminate by assuming a disabled person cannot do the job. Make allowances but recognise the positives too. Sarah: Don’t patronise. Alicia: Recognise that you may have people working for you and in your customer-base that have undisclosed or undiagnosed autism. This training could really improve your reach.

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Get help making your wo rkplace’s written information more access ible! Ask about our easy-read translation service.

To read our easy-read ne wspaper, Easy News, sign up today: www.unitedresponse.org.u k/easy-news

SPECIALIST AREA: COMPLEX NEEDS

Getting it right for people with multiple health conditions At United Response, we know that ‘one size doesn’t fit all’. We believe the best support should be tailored, creative and flexible – and never is this truer than when supporting people who have more complex needs.

Here, we look at how our team in Cornwall have successfully navigated the more unique support needs of 48-year-old Jason Yeats, who has Williams and Dysexecutive Syndrome. “Up until four years ago, Jason was living a dangerously unhealthy lifestyle,” explains Team Manager, Lynne Chellew. “He was living off junk food and takeaways and filling his days with little – if any – meaningful activities. When United Response came along in August 2014, we realised straight away that we needed to find a way of encouraging him to make a lifestyle change – and quick. Having Williams Syndrome put him at a far higher risk of heart disease than average so we had to get the balance right between letting him make his own choices, and helping him to stay healthy.” Getting Jason to understand the link between what he was eating and the risk to his health wasn’t easy. One of the symptoms of Dysexecutive Syndrome is an inability to understand abstract reasoning and thoughts. Jason simply couldn’t connect how eating too much high fat and sugary food now could lead to a heart attack in the future. To help him understand, his support team decided to stop talking to him about the destination – which was to become a healthy weight – and instead, focus on breaking down the journey into a series of tangible steps – ones Jason could understand. First, was getting him to buy his food in a supermarket, instead of in cafes and shops.

Jason is a guide at Pendennis Castle

“There was no real food in Jason’s house at this time – only biscuits or snacks,” explains Lynne. “He got anxious at the thought of going to a supermarket because it wasn’t what he was used to. It took us four months to ease him into doing a proper weekly shop. At first, he’d get upset and frustrated seeing all of the things in the cake and sweet aisles. But we persevered with steering him towards healthier alternatives, and eventually - with the help of some very good cooks in his support team - he did begin eating tastier and healthier food.”

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Jason used to live in jogging bottoms and oversized tops,” says Lynne. “Now he buys himself shirts, ties and chinos to wear.

Staff began holding a weekly weigh in with Jason, so he could see how changing his eating habits was having an impact on his body. He became encouraged and would phone Lynne excitedly whenever he lost more weight. His team knew it would be an ongoing battle to help Jason maintain his weight loss, but at last he was on the right path. Now his weight was being more carefully monitored, his support

IN TOUCH - WINTER 2019

BEST PRACTICE

team focused on ways to help him build a more engaged and fulfilling life for himself. A common characteristic in people with Williams Syndrome is a highly sociable personality, something Jason has in droves. But sometimes, this need to talk to people he doesn’t know and his over-friendly personality could be misunderstood by members of the public, as Lynne explains: “In social situations, Jason requires support from his team as he’s such a socialable person that he likes to approach members of the public and start talking to them. The team encourage him to remember the importance of personal space and this is reinforced by using a handshake when saying hello to someone, which helps Jason understand social etiquette.” His support team - who now understand his conditions - are better at thinking ahead and recognising any situations that may prove difficult for Jason and they provide the support to manage and overcome these. Together with Jason they even found a constructive way for Jason to make the most of his chatty nature – as a volunteer guide at Pendennis Castle. “Jason is the perfect person to be a guide as it involves talking to new people,” says Lynne, “Plus, it makes good use of his photographic memory, as he remembers every detail of the castle’s history.” Jason has paid employment with United Response as a trainer for new staff and as a Quality Checker, where he visits other services, meeting people and making sure their support is top notch. “Jason used to live in jogging bottoms and oversized tops,” says Lynne, “Now he buys himself shirts, ties and chinos to wear. He used to go everywhere by bus - now he has his own car that staff drive. He’s even lost 9 stone! Jason has come a long, long way and that really is thanks to having a support team around him who understand his conditions, are always on the ball and who plan, plan and plan so they’re always thinking ahead. We’re really proud of what he’s achieved, and his staff team.”

John Ockenden, from our Practice Development Team, explains another one of the approaches used by staff when supporting people.

Every Moment Has Potential In a previous Best Practice column I talked about Alex, who is in his mid-30s but hasn’t learnt the skills he needs to do many things independently. I described the natural choices anybody supporting Alex would feel they have: either to try and teach him skills, or do most things for him because learning complicated skills is likely to be unsuccessful and unpleasant for him and us. We know it’s not good for people like Alex to be doing nothing so we understand we have to be creative in finding things for them to be involved in. A lot of the time this is about our mindset. Everyday life is full of opportunities to do things, but when we’re supporting people like Alex we have to think in a particular way to make the most of them. We call this approach “Every Moment Has Potential” and it’s about seeing everything as a rich store of opportunities to get involved. Charlotte is a good example: she uses a wheelchair all the time and doesn’t use verbal communication; she can propel her wheelchair slowly, reach for things she wants and feed herself shakily with a spoon, but she doesn’t have many skills in daily living. Unless they think creatively, people supporting Charlotte will do most things for her. If they’re serving up her meal for example, they know she can’t reach up to the worktop so they do it all for her, and would spill lots of food. But if they bring the pans down to the table and hold them and a spoon steady for Charlotte she can help herself. It’s not a big thing but it changes the world for Charlotte.

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I’m delighted to see Charlotte being helped to do things for herself. Her mother was always worried she’d be helpless, but Charlotte’s staff help her show everyone she’s not. Maurice Green, family friend of Charlotte who we support in Yorkshire.

OVERCOMING BARRIERS WITH PEOPLE WITH MENTAL HEALTH NEEDS

4 8 House Inside

rom the outside, House 48 looks like any other house. An ageing building just off Bognor high street, it barely raises a glance from the passers-by trudging past. For the people with mental health needs who walk through its doors, however, it is a bright beacon in an otherwise foggy world; a place to go to when life is knocking you down and you need a helping hand to lift you back up. “House 48 gives people who are struggling with their mental health a safe place to go where they can be with like-minded people in a nonjudgmental environment,” explains service manager, Ruth Davies, “We support around 90 people; some who have been coming here over 15 years and in more recent times, people who have been referred by assessment and treatment clinics or self-referrals. Our aim is to support individuals’ recovery or provide early intervention from situations at risk of spiralling out of proportion.” House 48 helps people with a wide range of mental health needs, from depression or anxiety to more lifelong illnesses such as schizophrenia. The staff team provides 1:1 and group sessions, both in-house and out in the community, to promote health and well-being, self-esteem, confidence and independence. “People who come here liken it to a safe-haven where they know they can talk with staff - there and then - without having to wait

for an appointment,” says Ruth. “Quite often, an understanding, experienced ear, along with a cup of tea, time and patience means a lot to someone who at that immediate point in time, can’t see the wood for the trees. Some will need long-term support, others just need help to get through a rough period that’s having a detrimental effect on their mental health.”

Pamela* is 71, and until five years ago, admits she would have been described by those who knew her as ‘bubbly’ and ‘outgoing’. But unbeknown to most of the people in her life – including her own children – Pamela had been hiding a devastating secret. From the age of 11, she had been sexually and mentally abused by her younger brother, David*.

One of the strengths of House 48 is the proactive and positive way it works with other service providers and organisations to signpost people to more specialist support when needed. This may include experts in domestic abuse, dementia or substance misuse. This collaborative approach ensures people are always being offered the support that’s most suitable for their needs. For newcomer, Pamela*, House 48 has become a home from home since she was first referred 6 weeks ago.

“I had tried to tell my mother what was happening to me when I was a child,” remembers Pamela, “But she didn’t believe me. In fact, she turned around and laughed and called me a liar. I had to live with that for the rest of my life.”

“It’s a lifeline,” she smiles “It gives me something to get out of bed for in the morning.”

Like so many victims of abuse, Pamela was manipulated to believe she was to blame for what was happening to her. She hid her past from everyone except her second husband Ian*, whom she was married to for 31 years. But when he passed away three years ago, her grief — compounded with the fact she had lost her only confidant —

IN TOUCH - WINTER 2019

contributed to a worrying decline in her mental health. “After I lost Ian*, I started to struggle,” says Pamela, “I wasn’t sleeping. I was getting angry at people and would lock myself away. Then I got diagnosed with a degenerative health condition that caused me a lot of pain. One day, it was all just too much and I found myself dissolving all of my painkillers in one go in a glass of wine. I don’t know if I meant to do it or not. When I woke up the next morning, I remember thinking, “You’re alive. You made it through the night.” And then immediately being wracked with guilt at what I could have put my children through.” Pamela’s doctor assigned her a counsellor, who came to see her at her home. She began to talk about what had happened to her when she was a child, and was signposted to House 48, a place her GP described as ‘somewhere she wouldn’t feel judged’.

Not being left to wallow alone without support is something Robin, 41, is a strong advocate of. Diagnosed with psychotic depression when he was 17, and then later with schizophrenia, he has experienced the full slog of the mental health care system. At his lowest moments, he describes being overwhelmed with feelings of emptiness, paranoia and being ‘lost in the wilderness’. But since getting the right support with his medication, he’s been able to control his relapses. He’s been coming to House 48 since 2004 and has no intention of stopping. “It’s so much easier to struggle away from home,” he explains. “I feel more relaxed here – I don’t need to worry about my behaviour so much. I don’t have to worry about social niceties. The staff here help me with lots of things – my PIP application and even let me use their phone when I had a flooded kitchen and

needed to talk to the repairs people. If I didn’t have this place, I don’t know what else I’d do.” Robin is so grateful for the support he receives at House 48 that he proactively fundraises for the service most years. A talented musician, he busks in the high street every day, serenading shoppers with an eclectic range of hits from The Smashing Pumpkins, Nirvana, Ben E King and Bob Marley. His efforts earned him £1,000, which he put towards a three-course Christmas dinner for everyone at House 48. He plans on using the rest of the money to replace the communal piano that sits in the living room with a brand new Yamaha keyboard. “Organising the meal is a way of getting us all together to say ‘Look, we survived another year.’ Without this place, I’d be lost.”

She now comes most days, to do her crosswords or use the adult colouring books, which she says helps her focus her mind and relax. She knows she could do these things at home, but enjoys the company. “I can spend a lot of time on my own, and coming to House 48 gives me a break,” she explains, “I’m happy here. Without it I think I would have tried to overdose again. I need this place.” Just as Pamela kept her problems buried inside, so too do many people suffering with their mental health, as Ruth explains: “So many things can cause people to start feeling lost. A death in the family, divorce, losing a job, money or health problems. Early intervention is so vital. Without it, it’s all too easy to stay home alone, getting more depressed or anxious, until one day a mental breakdown occurs.”

“

If I didn’t have this place, I don’t know what else I’d do.

SOCIAL CALENDAR

The Autism Show

Zara: A giant outdoor theatre event for the whole family

June 14th-15th - London 21st-22nd - Birmingham 28th-29th - Manchester

19th-20th April - Halifax 10th-11th May - London A Mind The Gap production, Zara tells the story of mother with learning disabilities, Zara, and her fight to protect her baby. It features a giant baby, 3D projection mapping, a large cast of local performers and an original music score. These jaw-dropping elements will come together to tell the epic story. Tickets on sale now at www.mind-the-gap.org.uk/productions/zara

One Life Festival 7th-8th June - Isle of Wight Now in itâ&#x20AC;&#x2122;s second year, this inclusive festival aims to give children and adults with learning and physical disabilities a safe and supportive festival experience.

Each day will be packed with live music and accessible and fun activities. For more info and tickets, go to: https://onelifefestival.uk/one-lifefestival-2019/

Learning Disability Pride is a week of celebrations across Britain. It is led by Gary Bourlet, a leader in the People First movement and Founder of Learning Disability England. People who want to get involved can take part in scheduled events or hold their own. Nore information about whatâ&#x20AC;&#x2122;s happening, when and where will be available soon at http://learningdisabilitypride.org.uk You can also keep up to date with ther latest news by following them on Facebook: www.facebook.com/ldpride2019.

The Autism Show is the national event for autism, offering more information, help and advice on autism (including Asperger syndrome) than anywhere else in the UK. At each event you can choose from over 100 hours of talks, clinics and workshops plus view hundreds of specialist products and services which can make an immediate difference to those you care for. Tickets are available at http://autismshow.co.uk

Learning Disability Pride Week 15th-21st June