In January 2013 we looked at the final report and Concordat of the Department of Heath in response to the appalling treatment of vulnerable patients at Winterbourne View Hospital. That report, Transforming Care, set out a programme of action to seek to transform services for individuals with learning disabilities or autism who also have mental health conditions or challenging behaviour. The Government has now published a further report, assessing progress to date against the challenges and milestones set twelve months ago.
This latest report, One Year On, comprises seven chapters and three appendices, including a lengthy chart at Appendix 1 recording progress in the various work strands of the programme, across all the Concordat commitments.
The programme had as its aim:
To transform services so that people no longer live inappropriately in hospitals but are cared for in line with best practice, based on their individuals needs, with their wishes and those of their families listened to and at the heart of the planning and delivery of their care.
In summary, this meant in practical terms:
- All existing placements to be reviewed by 1 June 2013 and everyone inappropriately in hospital moved to community-based support as quickly as possible and no later than 1 June 2014.
- By April 2014 each area to have a locally agreed joint plan to ensure high quality care and support services for all children, young people and adults with learning disabilities (LD) or autism and mental health conditions or challenging behaviour in line with the model of care set out at Annex A of Transforming Care.
- A consequential dramatic reduction in hospital placements for this group of people and the closure of large hospitals.
- The creation of a new NHS and local government-led joint improvement team, with funding from the Department of Health, to lead and support this transformation.
- Strengthened accountability of Boards of Directors and Managers for the safety and quality of care provided by their organisations.
- The Care Quality Commission (CQC) to strengthen its inspection and regulation of hospitals and care homes for this group of people.
- The Learning Disability Programme Board within the Department monitoring and reporting on progress nationally.
While the programme has kept track of the 47 former residents of Winterbourne View still living, it goes much wider. Transforming Care estimated that there were 3,400 people in NHS-funded LD inpatient beds. Data from the Learning Disabilities Census, commissioned as part of the programme, report 3,250 individuals meeting the inclusion criteria (though, alarmingly, commissioners have the number as 2,677; 1,317 for CCGs and 1,360 for NHS England), with 60 per cent of service users in hospital for a year or more and one in six of these, mostly the older cohort, having been inpatients for five years or longer.
The scale of the task is enormous, when looked at globally, but each of these cases involves an individual with a right to support, dignity and respect; and while One Year On reviews the bigger picture, it emphasises repeatedly that the focus must remain on what is right for each individual.
Right care, right place, right time
Care of people with LD and challenging behaviour is the responsibility of a whole range of organisations and agencies. To provide leadership and support to the transformation of services locally, one of the first steps was to set up the Joint Improvement Programme (JIP) to work right across the health and care system and engage with families and advocates.
Heath and social care commissioning to meet the needs identified in joint strategic assessments is key to this aspect of the agenda. The Association of Directors of Adult Social Services (ADASS) has been working with NHS England and others to drive up quality and with the Care Provider Alliance to improve strategic relationships to enhance, rather than damage, LD services.
The Winterbourne registers of patients falling within the programme had all been drawn up in time for the PCT to CCG handover on 1 April 2013. Care plans for all those on the registers have been reviewed and a professional contact, in each case, identified. An Enhanced Quality Assurance Programme has been established to ensure that people are safe and to assure the quality of reviews. The care plans are now being implemented.
The JIP stocktake of local authorities (LAs), CCGs and Health and Wellbeing Boards revealed that, although all localities were engaged in working on the Concordat commitments, there was huge variation geographically, with only 49 per cent of returns clearly completed jointly by health and social care. JIP will be dealing with this as a priority, with regulatory powers being used against LAs and CCGs, if necessary.
Shared funding arrangements go alongside shared leadership in ensuring that care is needs-driven. Despite the Concordat highlighting pooled budgets as the way to achieve this, the stocktake showed these were still not being widely used, and rigid, and sometimes arbitrary, division of funding responsibility has been acting in places as a brake on progress.
Regulation; inspection; corporate accountability
CQC has worked hard to change the way it inspects services for LD individuals and to improve systems and checks when providers apply to register a service. Aspirant registrants must now indicate how their proposed
service fits with the model of care set out in the Concordat. Organisations must identify individuals at Board level who have day to day accountability and responsibility for quality, safety and compassionate care.
CQC has set out its strategy for inspections to 2016. Hospital inspections, including hospitals with LD services, will be led by the Chief Inspector of Hospitals, Professor Sir Mike Richards. Inspections of adult care LD services will be led by the Chief Inspector of Adult Social Care, Andrea Sutcliffe. The programme will involve unannounced inspections and inspection teams including service users and their families.
When inspections are carried out in any care setting, questions will be asked as to whether the service is safe, effective, caring, responsive and well-led. The Department has been working with CQC to develop a set of fundamental minimum standards; the penalties for non-compliance will be severe. Regulations to set these standards in law should come into effect this year and next.
In order to better seek to hold corporate bodies and their Boards to account for the provision of poor care and harm, there will be a new requirement that all Board Directors (or equivalents) or providers registered with CQC (be they from the public, private or voluntary sector) must meet a new “fit and proper person” test. Maintaining a board that meets this requirement will be the provider’s responsibility and directors found not to be fit and proper persons in one role may be banned from taking director positions with other providers.
And, further on the probity front, the Government has announced that the Care Bill will be amended to impose a duty of candour to ensure that providers are open with patients and service users about failures in care. The duty will be a CQC registration requirement.
Quality and safety: good practice, standards and advocacy
People with LD and their families have a particular need for well-trained and independent advocates when negotiating their way through the health and care system. The JIP stocktake found an encouraging 85 per cent of localities reporting that advocacy services were routinely available but, disappointingly, this did not marry up with the experiences reported by third sector organisation and families, who found issues with both access to services and quality. This mismatch will necessitate follow-up by JIP as a matter or priority. In the meantime, the department has been working with independent advocacy organisations and IMCA services to improve the quality of services available. It is also supporting the work of the National Development team for inclusion in taking forward work on review of the Quality Performance Mark and Code of Practice for advocates.
The Care Bill has been amended to introduce a duty on local authorities from 2015 to provide independent advocacy in certain circumstances where it is believed an adult or child in transition would otherwise experience substantial difficulty in being involved in their social care assessment, support planning or review. Draft regulations and guidance should be out for consultation shortly.
Next year, the National Institute for Health and Care Excellence will publish a clinical guideline on challenging behaviour and LD, in accordance with the Concordat commitment. Another is expected, in due course, on mental health and LD. These will set out in clear detail what good practice should look like.
Information and data
Transforming Care reported that there was a major gap in this area. There was evidently little clarity on the number of people with challenging behaviour in hospital settings or who was responsible for them. Much work has been done in this area although further challenges have thereby been identified.
The Learning Disability Census identified 3,250 service users amongst mental health and LD providers in the statutory, voluntary and private sectors, as at 30 September 2013. This pool of patients is naturally fluid, with
people entering and leaving the cohort. Add to this the complexities of definition and models of care commissioning and precision is almost impossible. However, JIP, the Local Government Association and NHS England are working hard to reconcile the figures so that a clearer picture can be obtained.
Alarmingly, providers overall were unable to supply a valid residential postcode for 28 per cent of inpatients; some had no idea where any patients’ family hubs were located. Where postcodes could be identified, just over one in five inpatients were staying in wards 100km or more from their homes although the census revealed a huge geographical variation in terms of placement distances, with patients based in urban centres tending to receive inpatient care closer to home than those in rural constituencies. The variation in length of stay has already been adverted to.
This agglomeration of baseline data will facilitate the tracking of future progress, though, and the census will be repeated this year.
The Concordat included a commitment that NHS England and ADASS would implement a joint health and social care self-assessment framework to monitor key health and social care inequalities from April 2013. Data collection has now finished and full analysis is awaited shortly.
The development of key performance indicators are essential to enable the Learning Disabilities Programme Board and local areas to get a firm grip on how services are operating in their vicinity. The Department of Health, Health and Social Care Information Centre and NHS England have been working together to produce initial draft KPIs, designed to measure both outcomes and quality. After a period of stakeholder engagement, it is hoped that the final KPIs will be ready for implementation from April 2014.
Quality and safety: medication, positive behaviour support and physical interventions Winterbourne View raised serious concerns that the principles and safeguards of the Mental Health Act 1983 and Mental Capacity Act 2005 were not being correctly observed. To address this, the department is leading a cross- system review of the implementation of the 1983 Act, is due to consult on changes to the Code of Practice, is reviewing implementation of the 2005 Act and is committed to working with CQC to agree how best to raise awareness of and secure compliance with the Deprivation of Liberty Safeguards (DoLS). The English Community Care Association is producing extra support and explanatory material for its members, on DoLS and human rights, and this will be published in the Spring.
The Department’s commitment to put Safeguarding Adults Boards (SABs) on a statutory footing will be achieved through the Care Bill. Statutory and good practice guidance will be revised to reflect the new legislation and to address the findings from Winterbourne View. In the meantime, and to prepare for this, the Concordat requires SABs to review their existing arrangements, not least to assure themselves that they have the correct information- sharing processes in place across health and social care to enable them to identify and deal with safeguarding alerts. ADASS and JIP report that good progress has been made in this area. Avon and Somerset Police’s process for triggering the early identification of abuse will be rolled out nationally.
The Concordat committed the Department, with external partners, to publish guidance on best practice around positive behaviour support and the minimisation of restrictive practices. Concurrently, work has been underway to review data held on the prescribing of antipsychotic and antidepressant medication for people with LD and challenging behaviour. Best practice guidance in both areas is expected shortly.
Quality and safety: workforce
Over the course of the twelve months since the Final Report, a range of organisations has been involved in meeting the workforce challenges raised by Winterbourne View. An account of detailed progress can be found at
Annex 1 of One Year On and Chapter 6 lists a whole host of guidance and standards in preparation. A common theme of the Cavendish and Francis reports was that all healthcare workers need the right training, not just doctors, nurses and social workers. The Government has asked Health Education England to work with Skills for Care, Skills for Health and other stakeholders to consider how the Care Certificate can be developed. Alongside these activities, other workforce development projects have been underway, designed to improve shared learning and engagement in contracting to provide personalised, effective, family engaging, close-to-home support.
This patient cohort should also benefit from many of the initiatives arising out of the Government’s final response to the Francis Inquiry, Hard Truths.
Children and transition
The Concordat’s Programme of Action made clear that a life course approach needed to be adopted to transform health and care services and improve the quality of care offered to individuals with LD or autism who have mental health conditions or challenging behaviour. Early and effective intervention is essential if problems are not to be exacerbated and life chances affected. JIP has emphasised the commitment to his area by appointing a Special Advisor to lead on children and young people and life course planning, and recognising the development of the core service specification in line with the model of care in the Final Report as a key piece of work yet to be completed.
The independent Children and Young People’s Health Outcomes Forum has been asked to provide recommendations in relation to prioritising improvement outcomes for children and young people with behaviour that challenges and to agree how best to support young people with complex needs in making the transition to adulthood. On behalf of the Forum, the National Network of Parent Carer Forums has issued guidance on integration of services for supporting children with complex needs in making the transition to adulthood. The Forum will recommend that supporting young people with complex needs, including autism or challenging behaviour, is a significant element of the transition guidelines in development by NICE. NHS England is developing a service specification for transition for the NHS, although progress on this has been slower than originally anticipated.
Work to align child health and learning disability datasets is underway and includes:
- A new learning disability measure being added to the Children and Young People’s Improving Access to Psychological Therapies (IAPT) data set in October 2013.
- Identification of those with LD in new large scale surveys of child health.
- A census of inpatient hospital beds for people of all ages with LD or autism who may also have behaviour that challenges or a mental health condition.
- Exploring and strengthening links between the availability of data on children and young people and adults through the work of the Child and Maternal Health Intelligence Network and the Learning Disability Observatory.
- Developing links between data sets.
The Department of Health agreed funding in July 2013 for stage one of the two year development of a Disability E- Learning Portal by a Royal College of Paediatrics and Child Health led Consortium. In addition, the Challenging Behaviour Foundation, in partnership with the Council for Disabled Children, is in receipt of three year project funding from the Department to review and develop resources that support good practice in services for children and young people with LD and challenging behaviour, and to work with stakeholder groups to increase the reach and access of these resources.
The Children and Families Bill will extend the Special Educational Needs system from birth to 25, giving children, young people and their parents greater control and choice in decisions. This new approach has the potential not only to ensure that children and young people who have extremely complex needs are supported with integrated packages of care planned and delivered according to their individual needs, but also to set an example to the wider NHS and social care of how to deliver integrated care co-ordinated around the patient.
The target date for this user group to be in receipt of appropriate personalised care and support is June 2014; a mere matter of weeks away, in reality. The Government has therefore identified five key actions in the countdown to June, to seek to accelerate progress on the Concordat commitments:
- Meet the commitment to ensure that individuals have moved or are moving to settings closer to family by June 2014.
- Establish robust systems for services users, their supporters and clinicians to feed into and challenge the initiatives being taken forward.
- Make a concerted effort to ensure that services are provided to a 21st century standard, including Positive Behaviour Support and guidance on minimising the use of restraint.
- Establish Key Performance Indicators, using data form the Single Assessment Framework and the census.
- Disseminate the model services specification to children’s and adult services, so that it can be used to drive up quality.
If these targets seem unattainable within the current constraints of time and money, one has only to recall the May 2011 edition of Panorama to realise just how unpalatable any loss of momentum at this stage might be.