Theo: Independence with Autism
In support of World Autism Day, we aim to promote awareness and an understanding of autism, as well as the importance of recognising the gifts, talents and resources that the people we support already have. We use person-centred techniques that enable individuals to have as much control over their lives as possible, ensuring they play a central role in the provision of their own support.
Theo is a man who enjoys going for walks through Virginia Water and Richmond Park, bopping his head to music and eating out at local restaurants; he also has autism, which means that routine changes are often quite difficult for him. Following the passing of his mother, the opportunity for Theo to stay at Certitude’s respite service and provide his family a much-needed break became a priority for all those involved with his care. Working closely with Theo’s family over a number of months, the team were able to ensure that his first overnight stay away from home in eight years was a success.
With the recent loss of his mother, Theo was transitioning through an incredibly difficult period of his life and required 2-to-1 support. He had become increasingly aggressive and his brother was struggling to cope with the increasing demands of Theo’s care.
Theo’s family discussed the preparation of his stay in great detail with the team. As he was not comfortable with changes to his routine, the agreed bed-time procedure mirrored that of his home schedule, while his brother provided a substantial amount of information regarding the situations that may arise throughout the night. Everything was prepared and ready, though Theo’s reaction to the evening’s plans were by no means certain.
Thankfully, Theo settled incredibly well – less than 10 minutes after tucking himself in, he began to shake the walls with his snoring!
Staff monitored his progress throughout the night and, in the morning, he was assisted with personal care, breakfast and medication before staff dropped him home at 8am.
Subsequent nights have, overall, been incredibly successful, and the overnight stays away from his home have been a gradual, cautious but positive progression in Theo’s development. This was also the first night in many years that Theo’s brother was able to enjoy a night to himself.
Theo’s brother now has time to meet friends, get through household tasks and has even taken on volunteering roles.
As an organisation, we work together with people and their families at their own pace to ensure we provide support in ways that work for them. We strive to be resourceful, finding creative ways to work in partnership with people, through thick and thin; we thank Theo and his family for sticking with us, too!
New alliance to transform the lives of people with serious long-term mental health issues
The Lambeth Integrated Personalised Support Alliance (IPSA) will offer people who currently go into long-term, expensive hospital rehabilitation wards or registered care homes the chance to live more independently in their own flat in the community.
The IPSA launches in April and offers personalised care and support to improve people’s lives, offering early intervention before they get into repeated crisis and require hospital treatment. The aim is to help people who use the services recover and stay well, participate on an equal footing in daily life and make their own choices.
The alliance is made up of five partners – the charities Thames Reach and Certitude, South London and Maudsley NHS Foundation Trust (SLaM), Lambeth Clinical Commissioning Group (CCG) and Lambeth Council. It’s part of a collaborative approach in the borough which brings together voluntary sector providers, health professionals, commissioners and the people using the services to devise a new way of offering services. At the heart of this new approach is a desire to see people with mental health issues as equal partners in their recovery, rather than defining them by their mental ill-health and by their use of services.
Helping people recover and stay well, participate on an equal footing in daily life and make their own choices.
The IPSA is looking to obtain accommodation from a number of sources. These include social housing providers, by purchase on the open market and by negotiating with existing supported housing providers to extend their schemes. The aim is to provide a range of accommodation – self-contained and shared, and with and without integral support – to support a new offer in which people have increased choice and control over the type of support they receive and also where they live.
Aisling Duffy, Chair of the Alliance Leadership Team, said: “Recognising people’s strengths and abilities is a way to empower individuals to make their own choices about the support they receive. We are excited to be part of this new approach which will give people the opportunity to be central to their recovery journey.’’
Getting techie with it! Helping people with learning disabilities lead more independent lives
Assistive technology is a growing industry, with more and more products coming on the market each year. However, many people are still unaware of what it is, and how it can benefit people we support.
With this in mind, Certitude held a ‘Getting Techie with It’ event in January, the aim of which was to showcase the range of technology available which can make a real difference for people with learning disabilities, whether their support needs are relatively mild or more profound.
The term ‘assistive technology’ refers to ‘any device or system that allows an individual to perform a task that they would otherwise be unable to do, or increases the ease with which the task can be performed’. It can cover everything from a simple alarm to the latest in biometrics.
At ‘Getting Techie with It’, a variety of technology providers showcased their products – some of the gadgets on display were really impressive, and it was inspiring to see how they could greatly enhance someone’s life, and enable them to be more independent. As well as staff from Certitude, a range of other providers also attended, with over 130 people coming to the event throughout the day.
Together with our Intensive Interaction team, we are working closely to see how additional equipment can support people to lead more independent lives, and how assistive technology options can play a key part of people’s support plans.
As technology improves, the more it can do to help people with learning disabilities to lead more independent lives – and is key to helping people live their lives more as they would wish.
LB Bill: Certitude’s response and approach
Over the past year, Certitude has been working to raise awareness following the preventable death of Connor Sparrowhawk, also known as Laughing Boy (LB), a young healthy man who also happened to have autism and epilepsy. He died following a seizure he had in a bath during his stay in an assessment and treatment unit.
Staff working directly with people with epilepsy, as well as parents of people with epilepsy, participated in a roundtable discussion in the summer to address how best to support people with epilepsy, balancing both safety and independence. There was a real dedication by those involved to take active steps towards their own personal commitments to better support people in our care.
Connor’s family and supporters have now started a campaign for a new bill, known as the LB Bill, to make it a legal reality for people with disabilities to be fully included in their communities, and to make it harder for the State to force people with disabilities to leave their homes against their wishes, or the wishes of their families.
The new consultation green paper ‘No voice unheard, no right ignored – a consultation for people with learning disabilities, autism and mental health conditions’ has largely come about as a result of the LB campaign. The key points include people being in charge of their care, supported by families and friends, people’s inclusion and independence in the community, the right care in the right place, and clear accountability and responsibility throughout the system. The consultation runs until 29 May and Certitude will be contributing to this consultation through a number of forums and supporting people to feedback.
Certitude firmly believes in working together with people with disabilities and their families as partners, to ensure they have the best possible support when and where they need it. Supporting people to become active participants in their communities, and building strong relationships with families to co-deliver and co-evaluate the services we offer so that we provide the best quality support.
We are absolutely committed to enabling people to live in their community, and are against any action which forces or coerces people against their will to move into residential care or an assessment and treatment unit. We have invested in person-centred thinking for a number of years and have more recently introduced an Intensive Support Team to enable people, especially those with profound and multiple learning disabilities, autism and individuals who are labelled as challenging, to be able to express what represents a good life to them and get the support they need to achieve it.
As an organisation, we have signed up to the Bill and have committed to the following pledge:
“Certitude supports the aims of the LB Bill, to promote a person with a disability’s right to live in their community and to make it harder for the state to force people with disabilities into residential care or treatment. We firmly believe in working together with people with disabilities and their families as partners, to ensure they have the best possible support when and where they need it. We are committed to doing what we can to support the ideas in the LB Bill to become law”
We are working closely with people we support and their families to actively ensure their voices are heard and they are able to comment and actively feedback their views.
New Paranoia and Beliefs Group
A peer-led support group for people who have experienced paranoia or related beliefs. A safe space where people can express themselves without feeling judged.
Opening meeting Thursday February 5th 2015
Fanon Centre 107 Railton Road Brixton London SE24 0LR
Open 6:30pm for food
Meeting starts at 7pm – 8:30pm
Hope to see you there!
For further information call 07710389577 or 07710389678
Choir performs at the 3rd Sector Care Awards
The Certitude Choir continues to grow and recently performed at the 3rd Sector Care Awards. Read more about the Awards here which celebrate and showcase the innovation and care excellence of the not-for-profit care and support sector.
“They were truly amazing and we want to thank you so much for allowing them to take part as it was without doubt one of the highlights of the day.”
Lisa Werthmann, Director of Creative Operations, Care Choices
Our all-inclusive choirs started in 2013 and are based in Ealing and Brixton. People Certitude supports attend but they are also open to members of the public too.
Cecelia who lives in one of the Certitude services and is a keen solo performer says:
“I love singing on my own for the choir – I’m not nervous at all. I like being on stage!”
Do you have time to care?
“Be the change you want to see…”
Certitude’s Lewisham Mental Health Adult Placement Scheme are looking for people from all backgrounds to become carers for people with a mental health diagnosis.
Join us for our Open Day on
4th February 2015 from 6pm – 9pm
The Catford Civic Suite
London, SE6 4RU
Light refreshments provided
Email: LAPS@certitude.org.uk for more info.
Crisis phone line crosses borders
Solidarity in a Crisis peer support service is expanding into Southwark and Lewisham. It has been an exciting time for the Lambeth service, run by Certitude, which has gone from a weekend crisis phone line to seven nights a week.
It has also been cited as a model of good practice in the London mental health crisis commissioning: Case studies (Strategic Clinical Networks, NHS England). The case studies are practical examples, which alongside the guide provide standards for the future commissioning of crisis services and is London’s response to the Crisis Concordat.
Patrick Nyikavaranda, Peer Involvement Co-ordinator, says it was an “amazing experience” to share with others what works and the challenges faced in “ensuring that people avoid, deal with or build resilience with each crisis they experience”.
Meanwhile, the team is growing and there are “learning opportunities and new challenges that arise on a daily basis”. Having new Team Leader Maria Gonzales on board, who is “inspirational, understands how to support people and is committed and passionate to working with people in distress has been a bonus”.
He adds that there have been many challenges with the project’s increased profile, the complexities of some of the calls, as well as the transition from a small team to a service expanding to other boroughs. The stark reality is that the service has been a lifesaver for some… “quite amazing when you think we are just listening”, says Patrick almost apologetically about the lived experience peer support tenets of being genuine, empathetic and congruent.
“Crises don’t just happen over the weekend”, adds Patrick, and the increasing number of calls validates a seven-day service. “November was very busy with people starting to get anxious about Christmas and family relationships and we’ve had more calls from people who hear voices. It’s also interesting to note we are getting more calls from people in employment, finding work stressful, doing long shifts and not having anyone to talk to when they get home.”
Patrick has nothing but praise for the 11-strong team (they have recently recruited two new people) who use their lived experience to listen and support people on the phone or meet in the community for a coffee at the weekend.
“They are amazing. Each individual brings unique qualities, which are giving people the opportunity to have what everyone craves for – to be able to listen to others, to have someone listen to you and to have some one stand by you.”
Each peer supporter has benefited from being part of Solidarity in a Crisis and there are hopes that more people will have that chance as the service expands. Through their lived experience, people “find healing as much as they begin to heal others, find solace as much as they provide comfort, are empowered as much as they facilitate choice and control in the lives of the individuals who access the service”.
Wise words were a lifesaver
Anna found a Solidarity in a Crisis flyer in her GP’s surgery in June 2014. She was struggling after she had returned to her job in corporate marketing, she thinks, too soon after her hospital admission. She was hearing voices and her medication wasn’t working.
She describes how the first SiaC peer supporter she spoke to on the phone that night helped to “talk me down”, when she was suffering from “extreme anxiety”. That, as well as sharing his own experiences and adding, “some wise words, which were a lifesaver”, have helped her get through the darkest times.
A peer supporter who has been with the service since its inception puts it thus: “Being part of Solidarity, now coming up to its third year, has been an incredible journey; in those moments of speaking to individuals has been filled with some sadness knowing the person is experiencing distress, but also a great privilege to be able to ‘be there’ for that person in a way they have needed it during the listening.
“During the next phase of SiaC and my time with it, I hope to continue this ‘being there’ for all who make contact and together find a clearing through that difficult moment that the individual is experiencing.”
Certitude’s Director of Mental Health Nicholas Campbell-Watts is excited and inspired by the opportunity to extend Solidarity’s work into Southwark and Lewisham and they will be recruiting local people to be on the phones from their own homes.
“Peer support should be part of the integrated offer of support available to people at times of personal crisis,” he says. “We know from the stories of people in Lambeth who have used SiaC that being heard, understood and accepted by someone else with a shared experience can be life-changing. SiaC will be available throughout Christmas and New year, including Bank Holidays as this can be a bleak time for people.
“The service has also started to pilot social evenings, bringing people together to develop mutual support and friendships that will hopefully reduce the isolation and loneliness that can exacerbate personal crisis. We are also designing workshops around crisis prevention and resilience and generally promoting well-being, as well as offering out of hours peer support for people experiencing paranoia and beliefs.
Article written by Karen Hooper
Shared Lives Carers wanted
Would you like to share your life? Have you ever thought about supporting someone in your own home?
Shared Lives gives people with learning disabilities the opportunity of living with a Shared Lives Carer in their home, either in a long-term arrangement or on a respite basis, which may be a day, weekend or a few weeks at a time.
We are looking for people who currently live in Wandsworth, have a spare bedroom and would be interested in sharing their home and life with someone who needs support.
Experience within the care sector is desirable, but not essential; what is important is that you have dedication and a desire to make a difference.
We believe in providing just the right level of support so people can flourish, contribute and lead a healthy life in just the way they want to. As a Shared Lives Carer you would have an important part to play to support people to have real choice and control over how they plan and organise their support.
We aim to match people by finding out their interests, skills and what makes them tick. This enables Carers to build positive and mutually beneficial relationships with the people we support.
Find out more what this sort of support means to someone like Lester, who lives with a Shared Lives family
Shared Lives Carers receive on-going support and a range of training opportunities from Wandsworth’s Shared Lives scheme. Shared Lives Carers receive a fee for the support they provide.
For further details and to contact Shared Lives please visit our contact us page, where you can email or telephone us.
A Shared Life is a Good Life
Lester loves chatting, travelling, dancing, theme parks, a night out at the local and Thunderbirds. In essence he loves life – and he wants to be a part of it. Fortunately for Lester he is living with a Shared Lives family who want him to make the most of his life too.
This means that Lester is part of a very natural network of family, extended family, friends, work colleagues and fellow volunteers. He’s lived with Maya, Patrick and their two children for 11 years and considers them some of the most important people in his life.
Lester goes on holiday with them and has notched up an enviable list of destinations including Mauritius, Germany, Holland and California. Every week Maya, Patrick and Lester go to the local pub for a relaxing evening out and once a month they all hit the dance floor at the Brixton Hootenany club night.
He is still close to his real family and enjoys spending time with his sister who lives in Brighton and his brother and his wife and their two children who live in Cornwall. “My nephews are great – when I send them birthday presents they send back notes saying Thank You Uncle Lester!”
Lester says he likes his Shared Lives carer, Maya, because “she has a great way of looking after me, keeping me clean and tidy and cooking my favourite meals”. This safe, stable, normal home life has provided Lester with the perfect base to branch out into his local community.
Maya and her family are really nice. They’ve encouraged me to get involved where we live and I now have a very busy life. I feel like part of the family. Lester
Lester likes to fill his days with purposeful activity and he is certainly making a contribution; twice a week he helps out at The Bridge – a centre for people with learning disabilities – where enjoys helping out “sweeping the floors, cleaning the windows and keeping the place tidy and nice”. He considers Barbara, Amy, Neil and the many others who work with him there to be good friends. On different days he collects money for Cancer Research outside the shop on Balham High Street. His personal charm and willingness to engage with people has made him a hit with passers-by and a great fundraiser. “I love talking to the mums and especially the children – I like to entertain them.”
On his one free day during the week, Lester meets with Mark, another Shared Lives carer, and together they do what ever Lester feels like. His zest for life is there for all to see in his eclectic mix of outing and adventures. Recent trips have included being part of the audience on the Paul O’Grady Show – “one of my favourite programmes” and a trip to Chessington World of adventures – “I love the bumper cars”.
Shared Lives gives people with learning disabilities the opportunity of living with a Shared Lives Carer in their home, either in a long-term arrangement or on a respite basis, which may be a day, a weekend, or a few weeks at a time. Shared Lives enables people to benefit from consistent support from people who know them well and to build positive and mutually beneficial relationships. If you would like more information about becoming a Shared Lives Carer, or living with a Shared Lives family, contact us.