The Tower Hamlets Community Learning Disability Service aims to support adults with learning disabilities to: - Make decisions and choices; Live a healthy life; Live an independent and safe live; Have a place to live; Have a job; Have positive relationships with friends and family; Go out, have fun, and meet new people; Get around and be respected in the community; Understand money And we aim to support carers to have a better life, and support families and carers in their caring role. These aims were co-produced with people with learning disability and their carers.
Highly Commended in Innovation in Community MH Category - #MHAwards18
Highly Commended in Quality Improvement Category - #MHAwards18
From start: Yes
During process: Yes
In evaluation: Yes
PP Collaborative: Yes
Find out more
Dr Ian Hall - Consultant Psychiatrist and Clinical Lead
Please briefly describe your project, group, team or service, outlining what you do and why it makes a difference
The Tower Hamlets Community Learning Disability Service aims to support adults with learning disabilities to: – Make decisions and choices; Live a healthy life; Live an independent and safe live; Have a place to live; Have a job; Have positive relationships with friends and family; Go out, have fun, and meet new people; Get around and be respected in the community; Understand money And we aim to support carers to have a better life, and support families and carers in their caring role. These aims were co-produced with people with learning disability and their carers.
The service is an integrated team provided by East London NHS Foundation Trust and the London Borough of Tower Hamlets, and has three subteams organised around the needs of the people we serve, that is Mental Health and Behavioural Support, Community Health and Well Being, and Transition.We always provide a detailed individualised multidisciplinary assessment, and then devise person centred programs of intervention, which include both social care, specialist health interventions, and very often involvement of other agencies, for example for employment support or welfare rights advice.
What makes your service stand out from others? Please provide an example of this.
The Tower Hamlets Community Learning Disability Service (CLDS) stands out from other services because of the degree of innovation.The application of Quality Improvement methodology has been really helpful in enabling us to achieve this. We have used this to: a) Ensure we provide NICE compliant support for people with challenging behaviour, including specifically i. Multidiciplinary review so that medication is never the first option, and people have access to communication assessment and positive behavioural support (PBS)
ii. The reason for giving any medication is always explicitly stated
iii. Medication is reviewed at least annually, with numbers being reported to the CCG
iv. Positive Behavioural Support training for our staff, for providers, and most importantl for parents and carers.
v. Using the STOMP (Stop Overmedication of People with Learning Disability) program to identify people known to primary care and not known to Tower Hamlets CLDS receiving medication for challenging behaviour, and developing a joint protocol to ensure their medication is also reviewed. b) Ensure that people with learning disability can get the right support to have blood tests by developing a multidisciplinary toolkit of interventions (e.g. desensitisation, suggested reasonable adjustments, accessible materials).This is enabling people who were previously excluded from health screening and medical investigations to access these.
c) Enabling people with learning disability to access the latest genetic testing techniques, providing people with an explanation of their disabilities, and more personalised interventions and support as a result.This required i. Education program for the team
ii. Development of accessible resources to explain genetic testing
iii. Close liaison with the Clinical Genetics service
iv. Integration of discussion of genetic testing into our initial assessment
v.Proving support for the explanation of results.
How do you ensure an effective, safe, compassionate and sustainable workforce?
All staff have access to Continuing Professional Development programs, or are on formal professional training programs.We also provide highly regarded training placements in medicine, psychiatry, psychology, nursing, art therapy, occupational therapy and social work, both at undergraduate and postgraduate level.This has been very helpful in recruiting to the service as many people on placement have subsequently been appointed to substantive positions.We also organise a highly regarded and popular training scheme for psychiatrists specialising in Psychiatry of Learning Disability across North London (as evidenced by the GMC survey) and have recently produced a video involving people who use our service to promote recruitment nationally in the speciality (see recruitment video)
We also contribute to workforce development more widely by providing training about people with learning disabilities to East London NHS Foundation Trust (ELFT), London Borough of Tower Hamlets (LBTH), to Primary Care, and many of our local providers.
Both ELFT and LBTH have flexible working arrangements, that enable many of our staff to combine work with extensive family responsibilities.
We have formal reflective practice discussions about people with learning disability both in our team meetings and also more widely in the Trust.
We receive excellent feedback about the compassion of our staff from students on placement.As a result of all these initiatives, we have very good recruitment and retention of staff benchmarked against other similar services.
Most importantly, we actively support people with learning disability into employment.This includes supporting people with learning disability to be Makaton Peer Tutors, who help people develop communication skills, and having apprentices with learning disability at CLDS, supported by a local access to employment service run by the Tower Project.
How do you work with the wider system?
Working with the wider system is an essential part of our vision, as we promote access for people with learning disability to a wide range of services.
We have a joint protocol with adult mental health services that enables people with learning disability to access mainstream mental health services, including inpatient services, home treatment team, early intervention service and emergency services at A&E.This involves a very high level of joint working, so that, for example, reasonable adjustments are made, and people can be discharged from inpatient stays promptly.This way of working as enabled us not to use specialist Assessment and Treatment services for over 5 years, in accordance with the Transforming Care agenda.
As part of our Quality Improvement program we have also developed a) a joint protocol with the Clinical Genetics service, which enables us to carry out the initial stages of genetic testing and only refer more complex cases to their service
b) a joint protocol with Primary Care that enables people on psychotropic medication for challenging behaviour to have their medication reviewed by the GP, and prompt support from CLDS if required.
We also work very closely with GPs to promote take up of Annual Health Checks and the production of Health Action Plans and Hospital passports, and in the last year have made very substantial progress with these as part of our performance framework.
Through the Learning Disability Partnership Board, we have developed an Accommodation Strategy, that is helping people with the most challenging needs be supported locally.
We have a dedicated transition team that works with children’s services including social care and education, to ensure that people can smoothly transfer into adult services.We identify and track cases from the age of 14 and assess at 17 to help ensure this.
Engagement with local social care providers is a crucial part of our role, as is enables the delivery of many of the specialist healthcare interventions we recommend.This is both at an individual level to achieve proper person centred care, but also at an organisational level, for example with the delivery of Positive Behavioural Support training and implementation.
We have close links with the Royal London Hospital and proactively work with the Learning Disability hospital liaison nurse when a person is admitted. We work jointly with social care colleagues in the service around discharge planning. We also attend the Frequent Attenders meeting to identify and support clients that present frequently at the acute hospital to identify ways to provide support within the community setting.
Our Community Nurses jointly run the Learning Disability Epilepsy Clinic within the Acute Hospital to help ensure people with learning disability get optimum treatment for their epilepsy.We also have developed a maternity pathway so that we work effectively with maternity services to ensure mothers with learning disability and their children access the best care.
Do you use co-production approaches?
Co-production is essentially to the way we improve and deliver services at Tower Hamlets Community Learning Disability Service.As described in question 1, people with learning disability and their families and carers were integral to developing the aims of the services.
One essential way we achieve this is through the Have Your Say subgroup of the Learning Disability Partnership Board.This is a facilitated group of about thirty people with learning disability who meet to discuss the agenda of the partnership board, provide advice, and also meet directly with other board members.This has really helped to shape how we develop services in several areas including a) Highlighting the need to provide a much better range of accommodation for people, especially people leaving the family home.This has led to the development of our Accomodation Strategy to provide accommodation for people locally with the most challenging needs.
b)Giving us many ideas to inform our work promoting access to GPs and primary care, particularly around suggesting reasonable adjustments they can make.
People with learning disability have also helped us to a) Produce a wide range of accessible communication materials
b) Design a logo for the service
c) Recruit staff by participating in recruitment panels
d) Deliver a much bigger, more confortable and friendly waiting area at our offices
e) Speak on a recruitment video we recently produced to encourage psychiatrists to work with people with learning disability (see recruitment video)
We also work very closely with carers in a variety of ways (including through the Partnership Board) that help us shape services: a) Running carers groups which help us identify service gaps, and have e.g. helped us increase the amount and range of respite options available
b) Helping us develop and commission culturally competent services, including two service providers that were started by parents and carers in the Bangladeshi community (APASEN and BPCA)
c)Removing barriers to referral, so we now have open access referrals and a single point of entry
Do you share your work with others?
We often share and discuss our practice with others, and also try and learn about good practice from other teams.Examples are given below.
Tower Hamlets Mental Health local mental academic program We regularly present cases for discussion to spread understanding of how to work with people with learning disability and mental health problems. Barts Academic Afternoon (regional mental health academic program for all psychiatrists in Trust and beyond) In May 2018 we organised a program on neurodevelopmental psychiatry, inviting guest speakers, presenting our Access to Genetic Testing QI project, and inviting a service user with autism to discuss his experiences. North London Academic Program in Psychiatry of Intellectual Disability On this program we regularly present cases for discussion, and have recently presented our QI projects on Genetic testing, and Ensuring NICE compliant care for people with challenging behaviour Royal College of Psychiatrist National Conferences on Psychiatry of Intellectual Disability At these meetings we have presented a poster on our Access to Blood Tests QI project , and done oral presentations on our QI project on Ensuring NICE compliant care for people with challenging behaviour International Congress of the Royal College of Psychiatrists, June 2018 Here we have been invited to present our Quality Improvement program on improving access to Genetic testing International Association for the Scientific Study of Intellectual Disability – forthcoming conference in Athens, July 2018 Here were are presenting our work on reducing inappropriate prescribing for people with challenging behaviour, a workshop about assessing capacity to consent to sexual relations in people with learning disability, and findings from the cluster randomised controlled trial of Positive Behavioural Support training that Dr Ian Hall (Consultant Psychiatrist) and Dr Jason Crabtree (Consultant Clinical Psychologist) were principle investigators.
Peer reviewed publications about the team’s work in the last two years include: (team members in bold) Hassiotis A, Poppe M, Strydom A, Vickerstaff V, Hall I, Crabtree J, et al. Positive behaviour support training for staff for treating challenging behaviour in people with intellectual disabilities: a cluster RCT. Health Technol Assess (2018) 22(15)
Hassiotis A, Poppe M, Strydom A, Vickerstaff V, Hall I, Crabtree J, Omar R, King M, Hunter R,Biswas A, Cooper V, Howie W, Crawford MClinical outcomes of staff training in Positive Behaviour Support (PBS) to reduce challenging behaviour in adults with intellectual disability: a cluster randomised controlled trial British Journal of Psychiatry (2018) 212 (3) 161-168
O’Kane N, Hall I, Eyeoyibo M Challenging Deprivation of Liberty: advocating for your rights Advances in Mental Health and Intellectual Disabilities (2017) 11(2) 47-53
O’Kane N, Hall I Guest Editorial: Mental Health and Human Rights Advances in Mental Health and Intellectual Disabilities (2017) 11(2) 29
Thomson H, Hall I, Shah A Improving physical health for people taking antipsychotic medication in the Community Learning Disabilities Service BMJ Quality Improvement Reports 01/2016; 5(1):u209539.w3933. DOI:10.1136/bmjquality.u209539.w3933
Sheehan R, Gandesha A, Hassiotis A, Gallagher P, Burnell M, Jones J, Kerr M, Hall I, Chaplin R, Crawford MJ. An audit of the quality of inpatient care for adults with learning disability in the UK. BMJ Open (2016) 6(4) DOI: 10.1136/bmjopen-2015-010480
Because of our success in delivering the building the right support model for the Transforming Care model, we are often asked to discuss our way of working.This has included Presentation of the model at RCPsych Intellectual Disability Conference, and to services in Newport, South Wales
Hosting a visit from the Mental Health Division of Ireland’s Health Executive Service (HSE)
Ciara Latimer (Service Improvement Lead at HSE) said of the visit:
The Mental Health Division of Ireland’s Health Executive Service (HSE) is actively looking at how we can improve our mental health services or for adults and children with Intellectual Disabilities.We recently had the great pleasure of visiting both Tower Hamlets Community Learning Disabilities Services and East London NHS Foundation Trust’s Neurodevelopment CAMHS teams, to learn more about how they are delivering similar services.
Our delegation were very inspired by the work we saw, in particular by both teams’ strong person centred approaches which focused on the actual needs of adults and children at every stage.We were also impressed by the close integrated teamwork of dedicated professionals, all working together to deliver quality services which effectively address mental health needs, but are also proactive in seeking out opportunities to prevent mental ill health.We wish to offer our sincere thanks to Dr Ian Hall and Dr Helen Bruce and their teams for their openness and welcome.
What outcome measures are collected, how do you use them and how do they demonstrate improvement?
In the past year, since the service transferred to East London NHS Foundation Trust as healthcare provider, we have been working hard to develop measures of performance and outcome in conjunction with the CCG and Local Authority.Examples of Key Performance Indicators that demonstrate positive outcomes for patients include Vastly improved delivery of Health Action Plans and Hospital Passports
100% delivery of medication reviews for people on psychotropic medication
Full implementation of Care Program Approach
In terms of the Transforming Care program, and key outcome measure is the use of inpatient beds, particularly those in Assessment and Treatment units.We have not used such beds for the last several years, because of our program of enhanced community support to prevent admission, and promoting access to mainstream inpatient beds.
We use a range of Clinician Reported Outcome Measures, as well as of course clinical assessment to assess outcome of our interventions.The main mental health one we use is HoNOS-LD.
We have successfully introduced PREMS in the last few months.These are collected both with manual forms and using tablets.The questions and format are designed to be accessible to people with significant communication problems.We are waiting for formal analysis of the returns, but levels of satisfaction with the service provided are generally high.We have already been able to take forward some suggestions from people using the service for specific service improvements including: Having more rooms available to see people
Creating a much bigger, more comfortable and friendly waiting area
Introducing a dedicated phone line for the Bangladeshi community to speak with a Bengali speaking worker
Has your service been evaluated (by peer or academic review)?
Services for people with learning disability and autism at East London Foundation NHS Trust have recently been inspected by the CQC, this included a detailed inspection of the Tower Hamlets Community Learning Disability Service.This was the first time the service has been inspected.The CQC rated services for people with learning disability Good, and the Trust retained its overall Outstanding rating.We are awaiting the detailed report.
In relation to Research, the service has a very close relationship with University College London.People using are service were involved in cluster randomised controlled trial of Positive Behavioural Support training for challenging behaviour, and Dr Ian Hall (Consultant Psychiatrist) and Dr Jason Crabtree (Consultant Clinical Psychologist) in the service were Principle Investigators in the trial.The results of this trial are currently being published (see publications above). Dr Hall is also a Collaborator for a study of Intensive Support Teams that is in progress, and for a trial of Indivdual Cognitive Stimulation Therapy for people with learning disability and dementia.The service is currently actively recruiting people who use the service into the trial.
How will you ensure that your service continues to deliver good mental health care?
We work very closely with commissioners both at the CCG and Local Authority to make sure we continue to deliver good mental health care.East London NHS Foundation Trust became the health provide for the service in February 2017, and we have since developed with commissioners a suite of KPIs and CQUINs that have, for example helped us deliver health action plans, hospital passports and medication reviews for people with challenging behaviour.We continue to develop and refine these.
The Joint Strategic Needs Assessment for Tower Hamlets, that we helped to produce with the local authority, is clear that the population of Tower Hamlets is expanding rapidly, and that we need expect increasing numbers of people with learning disability, many with a high level of needs including challenging behaviour.We have worked with commissioners to identify funding and set up projects to: 1. Provide a much better range of accommodation for people locally, to prevent people moving out of borough
2.To deliver Positive Behavioural Support by upskilling providers and families in this approach for people with challenging behaviour.
Prevention is an important part of our strategy.Being in an integrated service really helps us to deliver personalised support packages that enable people to lead fulfilling lives, that are essential in helping to prevent mental health problems and challenging behaviour.We also undertake screening to detect and address physical health problems in people taking antipsychotic medication, and our QI project that raised the awareness of genetic testing may prevent serious health problems in the future.
Finally our commitment to teaching and training professionals and providers, as well as carers will really help us deliver good mental healthcare in the future
What aspects of your service would you share with people who want to learn from you?
The aspects of our service that we would share (and indeed have shared) are
Our way of working Working as an integrated team, and providing proper person centred, individualised support, enabling easy access to our service, and supporting access to mainstream services, have all helped us deliver Transforming Care, and meant that people from Tower Hamlets are not using Assessment and Treatment units for people with learning disability
2. Quality Improvement The formal application of Quality Improvement Methodology has delivered NICE compliant care for people with challenging behaviour, as well as access to new technologies in genetic testing, and better access to health through a systematic approach to helping people access blood tests.
3. Research findings from our work with University College London on implementing Positive Behavioural Support, evaluating Intensive Support teams and studying psychological treatments for dementia in people with learning disability.
How many people do you see?
We received 248 referrals in the last year.53 of these were screened out and 12 were closed for another reason (e.g. not wanting to be seen).183 of these proceeded to assessment
We have about 880 cases open to the integrated service, about 450 of which are receiving specialist healthcare assessment and intervention
How do people access the service?
We accept referrals from any source.We encourage use of the referral form but do not insist on it.For people with learning disability and their carers we accept verbal or telephone referrals to help promote access. Referrals are triaged on receipt by the duty worker and discussed with the duty manager on a daily basis. There is also a weekly referrals meeting.
Our Transition team conducts information sharing with a wide range of Children’s services on an annual basis for year 9 students to proactively identify young people in transition who are likely to be eligible for a service. These are then tracked to until we receive a referral, and we send reminders at year 11 if they are not received.
How long do people wait to start receiving care?
We aim to see people within 28 days of referral.Urgent cases (be it social care, mental health or physical health) are seen within a few working days.
How do you ensure you provide timely access?
Referrals are triaged on receipt by the duty worker and discussed with the duty manager on a daily basis. There is also a weekly referrals meeting.Referrals are screened for eligibility before progressing to a full assessment.
We triage to identify the urgency of assessment and allocation to assessors.Urgent cases are seen within a few days, for example those in mental health crisis, and we aim to start all new assessments within 28 days.
All professional staff in the service are involved in assessment.
What is your service doing to identify mental health inequalities that exist in your local area?
Our local Joint Strategic Needs Assessment identified the high rates of mental health problems experienced by people with learning disability, and national studies have shown higher than expected rates of mental health problems experience by Black, Asian and Minority Ethnic groups, may of whom live in Tower Hamlets.
What inequalities have you identified regarding access to, and receipt and experience of, mental health care?
People with learning disability and people from black, Asian and minority ethnic groups are known to be less likely to access and receive mental health care, often due to communication barriers.
What is your service doing to address and advance equality?
We make the following adjustments to promote access to our service for people with learning disabilities and people from black, Asian and minority ethnic groups:
We offer longer appointments
We are flexible about changing the time of appointments
We provide interpreters whenever they are needed
All our staff are training in supporting people who need a high level of support with communication
Our staff have special expertise in identifying and treating mental health problems in people with learning disability
Our staff have special experience in the presentation of mental health problems in the Bangladeshi community and a culturally aware approach to intervention.We actively recruit staff from local communities to promote this
How do you identify the needs of a person using the service (such as their physical, psychological and social needs)?
All people accessing the service receive a comprehensive, multidisciplinary health and social care assessment.This is called a Single Assessment.Prior to a single assessment, we often use a screening tool if it not clear if the person has a learning disability.
How do you meet the needs of people using the service and how could you improve on this?
All our care for people with learning disability who have mental health problems or challenging behaviour is based on NICE guidelines.We have conducted a specific quality improvement project to ensure compliance with the NICE guidance on Challenging Behaviour.This, and our Transforming Care data, shows that we follow the DoH Building the Right Support model.
We have a dedicated team for people transitioning from children’s services to ensure they receive the best care and support.Our Transition team conducts information sharing with a wide range of Children’s services on an annual basis for year 9 students to proactively identify young people in transition who are likely to be eligible for a service. These are then tracked to until we receive a referral, and we send reminders at year 11 if they are not received.We often do joint assessments with Childrens services.We also work closely with commissioners to ensure that right services are being commissioned for the increasing numbers of adults with learning disability that we expect to live locally.
What support do you offer families and carers? (where family/carers are not the service users)
Most people with learning disability bring supporters and carers with them when we see us, and we always make time to speak with the carers.We have an active program of proactively offering carers assesments, and support services such as respite, as this is the most effective way of enabling people to continued to live locally.We have specific carer outreach programs for the Bangladeshi community, as this group historically have had problems accessing services, and have run groups for parents from this community.Carers are often concerned that the services the person with learning disability access are culturally competent, so we have worked with commissioners to ensure such services are commissioned.
Brief description of population (e.g. urban, age, socioeconomic status):
Tower Hamlets is an Inner London Borough just east of the City of London, and although there are pockets of wealth (e.g. in Canary Wharf), it is highly deprived in relation to other London Boroughs particularly in relation to income deprivation (especially among children and older people), housing barriers and crime (see Deprivation in Tower Hamlets).
Tower Hamlets has a diverse population, attracting communities from all over the country and the rest of the world. In 2016 the population is estimated to be 298,1087. It is expected to reach 345,360 by 2025.This is a highly diverse, mobile, and relatively young population, and its composition is continually changing due to both population growth and trends in national and international migration. At aggregate level, the health of this population tends to be significantly worse than elsewhere and this is linked primarily to the levels of socioeconomic deprivation experienced by a significant segment of the population.
Almost 69% of the borough’s population are from a minority ethnic group: 45% white, 41% Asian (32% Bangladeshi, 3% Indian, 3% Chinese), 7% black, 4% mixed ethnic, and 2% other. In the last decade international migration has shaped the profile of the borough’s communities; 38% (about 113,000) of the population were born outside of the UK. In 2011 the single largest ethnic group was the Bangladeshi population, although this group has decreased slightly as a proportion from 33.4% in 2001. See Tower Hamlets Joint Strategic Needs Assessment Summary.
There are In March 2017, 961 people in Tower Hamlets were registered with GPs as having a learning disability, 46%