Improving Health and Quality Mary Busk Family Carer Adviser m.busk@nhs.net

Agenda Who are NHS England? New National Learning Disability Director Sustainability and Transformation Partnerships Transforming Care for Children and Young People Links to SEND Other NHS England Projects to improve health and quality Ask Listen Do Project Participation and engagement commitment Questions

NHS England: Who are we? Lead the National Health Service (NHS) in England. Set the priorities and direction of the NHS and encourage and inform the national debate to improve health and care. Commission contracts for GPs, pharmacists, and dentists and we support local health services that are led by Clinical Commissioning Groups (CCGs). The Five Year Forward sets out our strategic vision for healthcare. https://www.england.nhs.uk/ourwork/futurenhs/

NHS Constitution For the first time in the history of the NHS, the constitution brings together in one place details of what staff, patients and the public can expect from the National Health Service. The NHS belongs to the people The NHS is there to improve our health and well-being, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives.

NHS Structure The UK Government has overhauled the way the NHS in England works. The centrepiece of the reform is the Health and Social Care Act 2012. Click on the link below to find out how the new healthcare system works and what is NHS England’s role within that: https://www.youtube.com/watch?v=8CSp6HsQVtw National Teams in NHS England including Improving Health and Quality within Learning Disability Programme NHS England has 4 Regional Teams including London

First National Learning Disability Director Ray James has been appointed by NHS England as its first National Learning Disability Director To drive improvement across the country on services to people with a learning disability, their families and carers. 

Sustainability and Transformation Partnerships The NHS and local councils have formed partnerships in 44 areas covering all of England, to improve health and care. Each area has developed proposals built around the needs of the whole population in the area, not just those of individual organisations. London has 5 STPs North Central London North East London North West London South East London South West London In support of the Five Year Forward Plan NHS Orgs and Local Councils have come to together developed STP. We have 5 in London there is not a specific outcome for SEND but there is a focus on health inequalities faced by children and young people.

Transforming Care

“Golden threads” Children, young people and families are supported to have a good quality of life. They are treated with respect and have an expectation of a home in their local community Children and young people should be kept safe but at the same time supported to take positive risks Children and young people should have choice and control over their lives Children and young people’s support should be provided in the least restrictive way Children and young people should get equal health outcomes to the rest of the population Equal!

The 9 principles of the service model Child, young person and family/ parent carers I have an enjoyable and interesting life My care and support is well planned I have choice and control about my care and support My family and paid staff get the help they need to support me to live in the community I have a choice about where I live and who I live with I get good care and support from mainstream health services I get expert health and social care support in the community if I need it I get help to stay out of trouble with the law if I need it If I need to stay in hospital because of my mental health or behaviour it is good quality In developing the model we have engaged with: People with a learning disability Their families Support providers Clinicians, Commissioners Academics Organisations Supported thro by a Core Reference Group There is some great stuff going on to support people now – but – it is not universal Service model built on previous Good Practice Documents e.g. Mansell & Valuing People Now Enhanced through Stakeholder Engagement, already mentioned It is based around 9 Key Principles – that promote Choice, Inclusion, rights & Independent living Its about putting people first and building the support around them – flexible & across the life span Its about Choice & Control – inc Personal Budgets Advocacy to strengthen People’s Voice Its about inclusion within the local community inc Employment & using support that is already out there Its about Supporting the Supporters Its about understanding a person, their needs, strengths & ambitions - & - designing the support to enable them to have a great life in their community No “ One size fits all” I want to Focus on a Few partiular features: This is an all age model – as we’ve mentioned often can identify children who will need support & can build resilience in the family as well as create a positive journey through Service Land Person at centre – Good assessment leading to One Plan & a Coordinator, from local community who remains consistently involved – identified point of contact for person & supporters – Has authority & responsibility to make sure the plan is delivered Coordinator works in partnership with the person ( family & supporters) to draw down the support needed personalising the support offer- & - can step up or down that support as required Liaison – In addition to the pre-emptive Reasonable adjustments that all NHS services must make – the Liaison Role bringing the skills from those specifically trained to support this population to those with the skills offered to population as a whole – Particular Key areas are :- GP practices; Acute Hospitals & Mental Health services – inc Court L&D – Addressing the Physical & Mental health Needs of this population is Essential – This Collaborative Care Model will help that Intensive Support – on occasion, individuals or those who support, will require additional support at times of difficulty ( & crisis prevention) – this will be provided through Intensive Support teams who have the appropriate values, skills & capacity to provide the intensity of support required – enhanced assessment & planning skills – developing proactive & reactive strategies – training, coaching & supporting the Supporters – Admission Avoidance – accessible 24/7 Reducing the Reliance on LD specific Inpatient beds : - in strengthening the Community we know we can reduce the number of specific beds we currently have - There may be times when treatment in a hospital is appropriate but it needs to be after Community Options have been considered; Outcome Focused; in right environment; for the shortest time; least restrictive; maintaining links to community; & Discharge Starts on Admission! – We have a programme of Beds closures planned for achieving over next 5 years This is an exciting Time & a great opportunity for all of us to revisit & dramatically improve how we support people with a learning disability to Have Great Lives in their communities

Which children and young people? All children and young people Children and Young people with SEND C Children and young people with learning disability, autism or both Children and young people with learning disability, autism or both with behaviours that challenge and / or a mental health condition

Strategy Effective TCP planning that links with other strategic programmes e.g. SEND / Futures in Mind Development of sufficient community provision and specialist support for children, young people Preventing hospital admission wherever possible through strong multi agency review and planning ensuring implementation of the CETR process and standards Appropriate provision for children and young people admitted to hospital no longer than necessary. Reducing health inequality - overmedication, general health, prevention of premature death.

Refreshed Care and Treatment Review Policy 2017 Code and toolkit for children and young people

Transforming Care Plans/Boards NHS organisations and local councils have developed shared proposals focused on reducing the inappropriate use of inpatient facilities, and building up community capacity to prevent future admissions of people with learning disabilities. There are 48 Boards. In London there are 6: North West London South East London South West London Inner North East London Outer North East London North Central London

Supplementary guidance for TCPs

Crossover with SEND Underpinning principles are the same Children and young people at the centre Co-production with children, young people and families Early identification and support can prevent crisis Supporting children and young people to have a good life. Working closely with SEND programme nationally, in regions and with DfE.

NHS England Role: SEND CCG Assurance and accountability. Leadership and Communication. Support CCGs with improving Transition National and regional structures to support this Assurance and accountability - the purpose of this work stream is to ensure there are robust assurance and accountability mechanisms in place around delivery of the CCG duties under The Children and Families Act 2014. Leadership and Communication. Overcoming local challenges through communication - To identify the key obstacles and challenges at a local level that are standing in the way of complete implementation of the SEND Reforms; and to articulate and share practical solutions and advice to overcome these challenges through a structured Communications Strategy focusing on both internal and external stakeholders, sharing practical solutions to overcome challenges. -To provide CCGs with information, guidance and where necessary training to support smooth and effective transition for SEND patients and their families.

Other NHS England Projects relating to Improving Health and Quality:

Health Inequalities work GP Guidance for health checks for children people with access needs including learning disabilities and autism https://www.england.nhs.uk/publication/guides-to- help-staff-support-people-with-access-needs/ Other work underway looking at health conditions and delivering quality care

Learning Disability Mortality Review Pilot The Confidential Inquiry (CIPOLD) found that people with learning disabilities were dying younger than other people. The University of Bristol (LeDeR) and NHS England are working together to look at the deaths of people with learning disabilities. NHS England Regions have set up a pilot to investigate the deaths of people with learning disabilities

The LeDeR Programme aims To drive improvement in the quality of health and social care service delivery for people with learning disabilities. To help reduce premature mortality and health inequalities in this population. To influence practice at service, individual practice and professional level. The LeDeR process does not aim to duplicate any other mortality process.

CQC Learning, Candour & Accountability http://www.cqc.org.uk/content/learning-candour-and-accountability CQC report published Dec 2016. Looked at the processes and systems trusts use to identify, investigate and learn from the deaths of people with a mental health problem or learning disability. CQC were not able to identify any trust that demonstrated good practice across all aspects of identifying, reviewing and investigating deaths, and ensuring that learning is implemented The reports makes 7 recommendations for relevant organisations. Mencap (2007) Death by Indifference’ told the stories of six to. Undertook an information request from all trusts 12 trusts visited Involved more than 100 families Gathered information from charities, NHS Professionals and other organisations. 22

Next Steps In support of recommendation 7 and the London Learning Disability Mortality Review there is an expectation for all health and social care organisations in London to: From the 20th March 2017 report all deaths of people with learning disabilities to the LeDeR Programme. This includes the deaths of both children and adults with learning disabilities. Review all deaths of people with learning disabilities for potential safeguarding concerns and if it meets the criteria for a serious incident. From 1st May 2017 all deaths of adults with learning disabilities should be reviewed utilising the LeDeR Review process. Deaths of children with learning disabilities should be reviewed via the Child Death Overview Process

STOMP: Stop Over-Medication of People with Learning Disabilities, Autism, or both STOMP Goals: Improve the quality of life of children, young people and adults with a learning disability, autism or both, who are prescribed psychotropic drugs. Make sure people only receive these drugs for the right reasons. And in the right amount. Improve understanding of these drugs and when they should, or should not. Improve understanding of non-drug treatments and support which may help. Make sure that people work with their doctor and the people who support them in making any changes to treatment. Now Looking at this for Children and Young People too Reference: Public Health England (2015) Prescribing of psychotropic medication to people with learning disabilities and/or autism by general practitioners in England, London: Public Health England. In 2015 Public Health England estimated that, on an average day in England, between 30,000 and 35,000 adults with a learning disability are being prescribed an antipsychotic, an antidepressant or both without an appropriate clinical reason. Unnecessary use of these drugs, puts people at risk of significant weight gain, organ failure and premature death. Is one of these 35,000 people your patient? Stop this happening and take action today. Check and review your patients immediately to ensure another day of potential harm doesn’t go by. -Prescribing Observatory for Mental Health: Nationally, over 60% of people with a learning disability who are seeing a psychiatrist, are being prescribed an antipsychotic drug but only half of these have the diagnosis of a psychotic mental illness that these drugs were developed to treat

Ask Listen Do Making concerns and complaints work for people with a learning disability, autism and families Core messages September 2017

Core message By law everyone has the right to good quality services and person-centred care. This might mean doing things differently to make sure people have the same chances of good outcomes. This can be difficult when people are not understood, listened to or if they do not get the right to complain When this happens people and their families can experience harm and injustice It is everyone’s legal and moral duty to stop this happening We want to make sure that people’s health comes first, and that complaints processes support this CARL Reference: Public Health England (2015) Prescribing of psychotropic medication to people with learning disabilities and/or autism by general practitioners in England, London: Public Health England. In 2015 Public Health England estimated that, on an average day in England, between 30,000 and 35,000 adults with a learning disability are being prescribed an antipsychotic, an antidepressant or both without an appropriate clinical reason. Unnecessary use of these drugs, puts people at risk of significant weight gain, organ failure and premature death. Is one of these 35,000 people your patient? Stop this happening and take action today. Check and review your patients immediately to ensure another day of potential harm doesn’t go by. -Prescribing Observatory for Mental Health: Nationally, over 60% of people with a learning disability who are seeing a psychiatrist, are being prescribed an antipsychotic drug but only half of these have the diagnosis of a psychotic mental illness that these drugs were developed to treat Ask people what they think of this message. Is it strong enough? Should it be stronger?

Ask Listen Do is more than…. Treating everyone the same Ticking a box e.g. “we have a comments and complaints system” Putting in a ramp Regulators like CQC saying we are OK Although these are all important too It is about human rights and quality of life CARL

The aims of Ask Listen Do To empower people to speak up and have a voice if there is a problem which affects their health or a loved one’s health To improve people’s understanding of how to raise concerns and complain To improve the way organisations ask, listen, act on and appreciate feedback and complaints To do this with organisations in health, social care and education All of this will make it easier for people to have their voices heard

What are we doing about it? We are carrying out this work between now and March 2019. We want it to have a long lasting impact Ask Help people understand their rights And feel OK about raising concerns or making a complaint Provide information to help people raise concerns and complaints And know who they should raise their concern with

What are we doing about it? Listen Work with partners in health, education and social care to see if and how they can change the ways they listen to people And how they ask for feedback as a way of improving their service so people are less likely to have problems using it Make sure that partners know why it is harder for people with a learning disability, autism and their families to complain and what they can do to help Encourage organisations and services to be more sympathetic Check they are doing this as part of their contracts and the rules or laws they have to follow Show what difference this is making

What are we doing about it? Make sure health, education and social care bodies lead and measure change in their sectors And help people raise concerns or complain Support organisations to improve services from the start so people are less likely to have problems Share good examples of listening and doing and set high standards for learning disability and autism services Make sure organisations act quickly to show what they are doing to put things right Make sure that organisations keep people informed of this and are not frightened to say sorry – and mean it That staff and services make sure complaints or concerns are dealt with properly eg. when it is a safeguarding, which must be acted on differently and quickly Check they are doing this as part of their contracts and the rules or laws they have to follow Show what difference this is making We did it!

Participation and engagement Parent carer representatives working as part of the steering groups from NNPCF, Inclusion East and Bringing Us Together, Challenging Behaviour Foundation Two Family Carer Advisers working in Improving Health and Quality Team

Any Questions?