Health and Social Care Bill

Memorandum submitted by Dr Claire Royston (HS 93)

Medical Director

Care Principles

Key areas covered in this submission by Care Principles to the Health and Social Care Bill Committee:

· Need for specialist NHS commissioning body for vulnerable learning disabled patients with complex difficulties, particularly those who have committed serious offences and require secure care and treatment. Other vulnerable groups include individuals with complex presentations of autism or aspergers syndrome

· Need for specialist psychiatrists to be significantly involved in commissioning for these patient groups

· Commissioning to be flexible, least restrictive and to provide a total care pathway, rather than a single episode of care.

· There should be recognition of the need for specific facilities for women learning disability and complex needs particularly those with personality difficulties or a forensic history.

· Payment by results and fixed national tariffs work less well in care for patients with very complex needs arising from learning disabilities as such patients needs fluctuate between various secure environments and service providers.

Part One

1. Introduction

1.1 Care Principles is an independent provider of services for people with learning disabilities and mental health problems. Fo unded in 1997 by a group of clinicians , Care Principles has established extensive clinical expertise in treating patients and has specialized in developing care pathways for individuals with complex difficulties arising from a learning disability including those with challenging behavior or a forensic history, personality difficulties and individuals with autism or aspergers syndrome. Care Principles’ patients are, almost without exception, NHS patients. Care Principles proudly sees itself as working in partnership with the NHS.

1.2 Care Principles now offers over 450 beds in 17   secure hospitals ,   community hospitals   and   care homes   around England , and employs 1 , 500 clinical and healthcare professionals , including psychiatrists, clinical psychologists, specialist nurses , occupational therapists , social workers and support workers.

1.3 Care Principles is part of an independent sector that leads the field in secure care for people with learning disabilities. The independent sector now provides half of beds for people with learning disabilities detained under the Mental Heath Act. (In 1998 15% of individuals with a learning disability were detained within independent hospitals. This had grown to 46% of individuals (545 of 1184) in 2008 - The 13th Biennial Report of the Mental Health Act Commission)

1.4 NHS commissioners recognise that, collectively, the independent sector has an immense knowledge base and clinical expertise in how best to provide tailor-made, personalised and specialist care to the above patient groups who often have challenging and/or offending behaviour and require secure care and treatment.

1.5 Care Principles notes that other submissions to the Health and Social Care Bill Committee – particularly that by the Royal College of Psychiatrists (RCP) - has highlighted many aspects to the bill which Care Principles shares . These include the welcoming of the bill’s f o cus on clinical outcomes and an increased involvement of clinicians in commissioning care and treatment.

2. Don’t forget people with learning disabilities

2.1 On behalf of Care Principles I would like to emphasise that policy initiatives to meet the clinical and rehabilitation need s of learning disabled offenders following Lord Bradley’s 2009 report m ust continue, and that the bill ensures this through measures laid out in Part 2 of this submission.

2.2 I would remind the committee that there are an estimated 5,800 prisoners with a diagnosis of learning disability. According to Prison Reform Trust research these individuals suffer ‘routine human rights abuses’. Further evidence of their vulnerability in prison is research (included in the Prison Reform Trust report, No One Knows) indicating that they are five times more likely to be restrained and three times more likely to be segregated than non-learning disabled prisoners. These are harrowing statistics. Lord Bradley, 2009, noted that "custody exacerbates mental ill health, heightens vulnerability and increases the risk of self-harm and suicide."

2.3 Lord Bradley also drew particular attention to Baroness Jean Corston’s 2007 report focusing on women in the criminal justice system who have particular vulnerabilities, including learning disabilities.

2.4 As a consultant psychiatrist with 27 years of clinical experience I am confident most of the estimated 5,800 learning disabled prisoners, some of whom have committed serious crimes ; have not been assessed to determine if specialist treatment to address both their learning disability and offending behaviour would be appropriate. It is my view that many such prisoners would be likely to benefit from specialist secure hospital care and treatment. It’s unacceptable they are not receiving it. Commissioners would share my recognition of this shortcoming.

2.5 It is vital to emphasise that the provision of appropriate assessment and treatment for this group can not only deliver significant therapeutic benefits to the individual but would also benefit society as a whole. This is because effective treatment reduces the likelihood of re-offending and the burden of harm – and associated multiple costs - to any future victims.

2.6 In its submission to this committee, the RCP highlighted the great importance of protecting the needs of patient s with severe and complex mental disorders. I agree. But the bill must also make sure it protects the needs of people with learning disabilities , including those languishing in Britain ’s prisons.

2.7 People with learning disabilities have historically lost out when compared to people with mental health problems. Throughout British psychiatric and mental health history - from the closing of the Victorian asylums to community care and revisions to the Mental Health Act - policy has always been weighted more towards people with mental heath problems than those with a learning disability. The Health and Social Care Bill – representing the biggest-ever proposed change to NHS structures - is a watershed moment to help redress this imbalance.

Part Two

3. Key areas for Care Principles - Health and Social Care Bill 2011

(i). Vulnerable learning disabled patient groups

The bill must protect the interests, and ensure appropriate and cost-effective clinical and care pathways, for the following three patient groups.

1. Offenders with a learning disability

2. Offenders with a learning disability and a personality disorder.

3. People with complex presentations of autism

3.2 Due to the complexity of the difficulties presented by these three patient groups and the risks they often present both to themselves and others, many will require institutional – often secure - care for a significant part of their lives.

3.3 Many patients will be managed within the framework of the Mental Health Act and/or the Mental Capacity Act.

3.4 Nationally, these three groups represent a relatively small number of individuals – perhaps less than 10,000. However, potentially they may be disproportionately vulnerable within proposed commissioning arrangements as presented in the bill. The reasons for this are laid out below.

(ii). GP consortia

3.5 GP consortia are likely to be ill-equipped to manage and commission the complicated and often lengthy care pathways of the three patient groups I have identified. Research in July 2010 by mental health charity Rethink reported that just 31% of GPs felt equipped to take on the role of commissioning mental health services. This percentage could be lower for the very complex learning disabled patient groups I have identified.

3.6 For example, a patient who has committed a sexual offence and has been diagnosed with a learning disability may be transferred, over the course of five years, from a medium secure unit, to low secure and back up to medium secure. GPs, who may not even have had face-to-face consultations with such patients, lack familiarity with the range of clinical, risk assessment, and legal particulars (Mental Health Act and Mental Capacity Act) involved in this person’s care, treatment and rehabilitation.

3.7 Plus, due to the relatively low numbers of patients within these groups most GPs would have extremely limited – if any – experience of commissioning for them.

(iii) Payment by results and national tariff

3.8 While payment by results and fixed national tariffs may be viable and applicable in many areas of healthcare – such as surgery or treatment for depression - it works less well in care for the three patient groups I am focusing on. This is because such patients’ care needs– including that of the example patient above - may fluctuate between various secure environments, and service providers, over years and even a lifetime. It will be inherently problematic to provide one national tariff for such service variations to meet the healthcare and risk-management needs of such patients.

3.9 Moreover, if a patient is in medium-secure care and it is decided that for clinical reasons they are able to move to a low-secure facility, then presently a new commissioning agreement has to be initiated. Because of this, what is happening up and down the country is that if even if it is in the patient’s clinical interests to ‘step down’ to a community hospital environment, clinicians can be inhibited or delayed in arranging a transfer. Even the best risk assessment of the appropriateness of the move cannot guarantee that a patient will adapt to the new environment. Trial transfers and the ability for a clinical team to respond immediately to a failed transfer by a move back to conditions of greater security are inhibited by the current separate funding structures. The result is that clinicians feel compelled to keep patients in an unnecessarily higher level of security than their patients are rightfully, and clinically, due. This is not only wrong, it is alarming, especially when considering the additional constraints on a person’s liberty that being held in higher-than-needed security entails and the significant cost implications.

3.10 In light of this, it is important that flexible care pathways are commissioned for these patient groups, and that the pathways include transitions through various levels of security based on clinical need and not restricted by fixed and separate budgetary frameworks. Questions must be asked as to whether GP consortia, for reasons outlined above, have the skills and knowledge to handle this commissioning paradigm.

3.11 I also urge the committee to reflect on the above points while remembering that Valuing People Now (DoH 2009) trumpets inclusion, independence (personal development/competence) and choice (control) for people with learning disabilities. Valuing People Now states that people with learning disabilities should have the same rights and choices as everyone else, and should have an equal right to be treated with dignity and respect. Indeed the learning disabled patient groups I am focusing on are among the most vulnerable and marginalised people in our society. So, particularly for these patients and in order to adhere to the principles of Valuing People Now, care within the least restrictive environment must be a commissioning goal. Again, if that means a clinician deciding that stepping down to a low-secure environment is in the patient’s healthcare and person-centred interests this should be provided without the administrative requirements of a new commissioning process acting to impede the delivery and quality of clinical care.

(iv). Specialist NHS Commissioning Board Committee

3.12 In its remit for the NHS Commissioning Board, the bill states that: "The Board may appoint such committees and sub-committees as it considers appropriate"

3.13 For the reasons I have discussed, such a specialist committee is required for the three patient groups I am focusing on. A NHS Commissioning Board specialist committee, and not stand-alone GP consortia, would be the appropriate forum for the development of commissioning expertise for these patient groups.

(v) Psychiatrists’ involvement in commissioning

3.14 The RCP and the Royal College of Practitioners have both stated that in order to meet the needs of mental health patients with complex difficulties, the role of psychiatrists in advising commissioners will be vital. I agree. But I would add that the same applies to the learning disabled patient groups I have identified. Again I urge, don’t forget people with learning disabilities.

(vi). Joint Commissioning Sub-Panel For Learning Disability.

3.15 In its submission to the committee, the RCP discussed how it has launched, with other bodies, a Joint Commissioning Panel For Mental Health. This panel will provide commissioners with knowledge, skills, and tools and insight, as well as launching a practical framework for mental health commissioning.

3.16 I support this, but again I would ask that the committee take the opportunity to reflect on the need, as mentioned previously, to re-dress the policy emphasis towards people with mental health problems. Would a separate Joint Commissioning Panel For Learning Disabilities help redress this imbalance? Or perhaps a sub-panel for learning disabilities within the Joint Commissioning Panel For Mental Health or appropriate panel members with experience of learning disability.

March 2011

Part Three


* Royal College of Psychiatrists. Health and Social Care Bill 2011; Royal College of Psychiatrists; Second Reading Briefing; House of Commons.

* Lord Bradley. Lord Bradley's review of people with mental health problems or learning disabilities in the criminal justice system, 2009

* Prison Reform Trust. No One Knows, 2007

* The Mental Health Act Commission 13th Biennial Report 2007-2009.
Baroness Jean Corston. The Corston Report – Women in the Criminal Justice System . Home Office. 2007
* Rethink, 2010
. GP Survey on mental health commissioning

* Department of Health (2009) Valuing People Now. A new three-year strategy for people with learning disabilities