Adult social care is in urgent need of reform

That, at least, is the conclusion of the Law Commission, which is currently in the middle of a systematic review.

Around 2.5m people currently receive adult social care, which comprises such things as care homes, residential accommodation and day centres; equipment and adaptations; meals and home care; carers’ services and aftercare, and services for disabled children. For the last 60 years, it has been covered by a patchwork of laws, which the Commission now describes as “inadequate, often incomprehensible and outdated”.

Complexity
One problem is complexity. “Given that the law has developed piecemeal since 1948,” the Law Commission says, “it does not provide a clear and principled approach to assessment and service provision.” It consists of more than thirty statutes and a plethora of other regulations and guidance, some of which overlap or even duplicate each other. There are, for example, at least three main statutory provisions placing duties on local authorities to carry out a community care assessment. And the Commission notes the words of Lord Justice Dyson, who in a case in 2007 expressed his “dismay at the complexity and labyrinthine nature of the relevant legislation and guidance, as well as (in some respects) its obscurity.”

For the Law Commission, this complexity leads to inefficiency. Because “too much time and money are spent on understanding the law and on litigation.” It might also stifle innovation and create “arbitrary differences in legal rights and status between different service users and different kinds of service.”

Outdated concepts
Because many of the Acts that make up adult social care law were passed many years ago, they are based on concepts of disability that can seem inappropriate today. The Law Commission suggests that there is, for example, a presumption in favour of institutional care for disabled and older people, which means that the community powers are much less certain. Language is also a problem. The key adult care provision is still the National Assistance Act 1948, but it speaks of “welfare arrangements for blind, deaf, dumb and crippled persons”. And then there is the question of whether medical language ever be used to determine eligibility for social services. The Commission wonders whether we should ask not “what is wrong with this person?” but “what is wrong for this person?”

Reform
The Law Commission wants to see if the legal framework for adult social care should be simplified and made more consistent, more transparent and more modern. It might be possible, for example, to put the various powers and duties concerning adult social care into a single statute, and to include overarching principles to help local authorities, the courts, service users and carers carry out their functions or understand their entitlements.

There might also be a single, simple duty to assess patients’ and their carers’ needs in the community. Furthermore, guidance on access to NHS continuing care might be clarified or refined.

The Law Commission says that rules that establish which local authority will be responsible for providing services could be reviewed, to address questions such as what ‘ordinary residence’ means and whether those rules compound the difficulties service users and carers face when moving from one area to another. It also suggests that where an individual must demonstrate that he falls within a particular category if he is to receive adult social care services, it might be possible to use the same classes throughout the legislation. And something could perhaps be done to update offensive and outdated terminology.

The rules concerning direct payments, which allow local authorities to give cash direct to service users so that they can themselves purchase the services that will meet their needs, could also be revised or simplified. It might also be possible – always providing it is desirable – to have a single, simplified provision obliging local authorities to recover payments for residential accommodation and giving them a discretion to do so for domiciliary and community care. And it might be possible to re-draw, or at least to clarify, the boundary between health services and care services. And consideration might be given as to whether health authorities and local authorities should be obliged to co-operate with each other.

Finally, the LC wants to consider whether the current adult protection framework should be put on a statutory footing; whether, and if so how, the definition of ‘vulnerable adult’ might be changed; whether local authorities should be obliged to investigate suspicions of abuse or neglect; and whether social workers and other professionals need wider powers to enter domestic premises where there are suspicions of abuse. In addition, the Commission proposes to review the power, contained in section 47 of the National Assistance Act 1948, to remove a person from his or her home to a place where he or she can be given the care and attention she needs and is lacking.

Few will disagree with its conclusions, but some might wonder whether the LC is best placed to do all the work it now wants to do. The adult protection framework and the direct payments system are already the subject of government reviews and a turf war would be terribly distracting. There will be little appetite for revisiting the continuing care system so soon after the government published what it hoped was comprehensive guidance. And the suggestion that health responsibilities and social care responsibilities might be divided up in a different way is likely to cause concern, not least within the NHS, which is widely thought – not least by the courts - to benefit greatly from the current arrangements.

The Law Commission’s report may be found here

Patients, their victims and the NHS

Health services now have much greater obligations towards the victims of their patients

On 3 November, most of the Mental Health Act 2007 came into force. Its main purpose was to amend the Mental Health Act 1983 (MHA). Now it has done that – and done it controversially – the 2007 Act will melt away. But it will leave behind some significant amendments to other acts of Parliament as well.

One of those amendments is to the Domestic Violence, Crime and Victims Act 2004 (DVCVA), which gives the victims of certain sexual or violent offenders the right to receive information over the course of the offender’s sentence and to make representations about any conditions to which he will be subject on release. (The offences in question, of which there are a great many, are those scheduled in the Criminal Justice Act 2003.)

Since 2005, similar rights have been available to the victims of offenders whom the courts have ordered to be detained in hospital and who are subject to special restrictions. Under MHA, restrictions may be imposed by the sentencing court if it considers them necessary to protect the public from serious harm.

The effect of the 2007 Act is to extend these rights to the victims of patients who, though they are detained in hospital by court order, are not the subject of special restrictions. The same rights will apply where such a patient is discharged from hospital onto Supervised Community Treatment (SCT).

To assist victims, there are new statutory duties. Many of the new duties will be owed to victims by the NHS trust responsible for the hospital in which an offender is detained. The MHA calls it the ‘hospital managers’.

It will usually be the responsibility of probation services to identify eligible victims and, with their consent, to pass on their details to hospital managers. Where a court sends an offender to hospital for mental health treatment, the managers will have to give information to his victims and pass on any representations they make.

Where a NHS body – such as a hospital trust or, in some cases, a PCT – has the power to discharge a patient from detention under the MHA or take him off SCT, it may only do so once it has considered any representations the patient’s victims have made.

Where a patient is detained in hospital by order of the court, the clinician with overall responsibility for his case must inform the managers if he is to be discharged or certain decisions are to be made about him. The clinician must also consider the representations of any victims when deciding what conditions to impose upon a patient who is discharged onto SCT. An approved mental health professional (AMHP) will also have to consider any such representations when deciding whether to agree to those conditions.

Guidance suggests that in order to discharge their new duties properly, hospital managers will need to have in place arrangements that allow them to: identify relevant patients and know which victims have asked to make representations or receive information; invite and pass on such representations; give victims required information and decide whether to give them additional information; and inform the managers of any new hospital that becomes responsible for a patient.

This will increase the workload of probation services, clinicians and AMHPs considerably. The greatest burden, however, is likely to be borne by NHS services. Official figures suggest that now the unrestricted have been added to the restricted, the number of patients whose victims enjoy DVCVA rights has increased by almost 50%.

The guidance referred to here was published by the Department of Health and the Ministry of Justice, and may be found here

And the public gets what the public wants

The NHS has a new duty to involve the public, one that could apply wherever new services are proposed or existing ones changed.

The duty was introduced on 3 November 2008, because, the government says, “NHS managers have not always been clear when they have to involve people and how best to do this.”

The changes realise a pledge made by Lord Darzi in May of this year. In his Next Stage Review, he told the public: “You will be involved ... Those affected by proposed changes will have the chance to have their say and offer their contribution. NHS organisations will work openly and collaboratively.” They are also consistent with the current NHS operating framework, which says “the NHS needs to get much better at listening and responding to the patients who use our services, the staff who provide them and the citizens who fund them”, and with the vision for World Class Commissioning announced a year ago.

The new duty isn’t the first, of course. Section 11 of the Health and Social Care Act 2001 dealt with public consultation, and its provisions were replicated in section 242 of the National Health Service Act 2006. (NHS Act) The new, strengthened duty has been introduced by the Local Government and Public Involvement in Health Act 2007, which inserts section 242(1B) to the 2006 Act.

The new sub-section says that in England, every SHA, PCT, trust or foundation trust should involve the public when it plans its services, proposes to change the way they are delivered or makes decisions that affect their operation. (NHS Act, s 242(1B)) This duty will apply to services the NHS body itself provides, and also to those provided on its behalf or at its direction. (NHS Act, s 242(3)) And it is for the benefit of ‘users’ that the change has been made. That means anyone who is using, or may use, the services in question. (NHS Act, s 242(1B) & (1F))

The circumstances in which the new duty will apply are considered in guidance published alongside it. They include where mental health services are reconfigured across a SHA or PCT area; where plans are made to provide hospital services from a different site; and where changes are made to the opening hours of a family planning clinic.

As to what ‘involvement’ means, the guidance says: “Think about proportionality and appropriateness, understand and use a spectrum of involvement, and know when to use the different activities which range from giving information through to active participation in planning the provision of services.”

Because of the 2007 Act, the NHS Act now includes a second new duty: to report on consultation. The government says, “the NHS does not always tell people what action they have taken in response to feedback”. This should change.

From April 2010, each SHA and PCT will have to publish a report, setting out its past and future consultations about commissioning and any influence they have had. (NHS Act, ss 17A & 24A) Directions made by the Secretary of State require the first such report to be published between April and September 2010 and to cover commissioning decisions in the previous twelve months.

Unlike the duty to involve, however, the duty to report applies only to primary care trusts and strategic health authorities that commission health care services; not to NHS trusts or NHS foundation trusts.

The guidance on the new duties is detailed, if a little convoluted. The government acknowledges, however, that although the NHS bodies must have regard to it, they will not be bound by it and may depart from it if they have good reasons for doing so. (In fact, case law says that any departure will have to be based on ‘cogent’ reasons, but it isn’t clear how they might differ from good reasons.)

The new duties are likely to be included in the new NHS Constitution, a consultation on which has itself just closed. The new constitution is due to come into effect in 2009. Before then, the government says SHAs, PCTs and trusts might: review the information they already have about community needs and ensure they are making the best use of it; consider the groups and individuals that have been consulted in the past and who should be consulted in future; think about what they want from future involvement, how it can be imbedded in their organisation and whether it can be linked to work on joint needs assessments; and decide what resources they will need in order to comply with their new duties.

A second edition ...

A second edition of my book, The Nearest Relative Handbook, will be published in January.

The book is intended to be a lucid, concise guide the role of the nearest relative and the way it might fall - or be given - to an individual. It should be of use not only to nearest relatives themselves, but also to Approved Mental Health Professionals, Responsible Clinicians and other practitioners; to patients, their families and carers; and to hospital managers, police officers, lawyers, academics and policy-makers.

The Nearest Relative Handbook sets out and explains the complex criteria by which a nearest relative is to be identified and the grounds upon which he or she may be displaced by the court, and it does that not only for adults, but also for children. The book also considers the duty of consultation that some professionals owe to nearest relatives, and other, associated issues, such as Mental Health Review Tribunal rights and information-sharing.

The book has been completely re-written for its second edition, and now includes a wealth of material on the changes made by the Mental Health Act 2007, which have particularly affected the process and grounds for displacement. It also has nearly 50 per cent more practical scenarios.

Review of the first edition were very favourable. They include:

An excellent, comprehensive and thoughtful guide to the rights, powers, and duties of nearest relatives under the Mental Health Act. This is the definitive work on the subject - Phil Fennell, Professor of Law, Cardiff Law School

This intelligent and comprehensive analysis is a welcome addition to the currently scant literature in this area - Journal of Mental Health Law

The rules are comprehensively worked through and the examples clear - Tony Eaton, Solicitor, Brent Community Law Centre

There can hardly be a professional concerned with the Mental Health Act 1983 and its practical application who will not benefit from having this book to hand - New Law Journal

The second edition of The Nearest Relative Handbook will be published by Jessica Kingsley Publishers at £17.99. Further details, together with an order form, may be found here

Here it is ...

The book that gives this blog its name was published today. A Tendency to Laugh and Sing collects together more than 50 of my essays, lectures and letters on mental health law and in the process, addresses some of the most contentious issues of the day. The pieces, which first appeared in publications such as The Times, the New Law Journal and the Journal of Mental Health Law, are about such things as seclusion, the Bournewood case and the reform of the Mental Health Act. Amongst many other things, they look at re-detention following discharge, the rights of incapable detained patients and the statutory immunity from suit, and one of them asks the question: what is a hospital? The book will be of great interest to anyone who is subject to or works with the Mental Health Act, and to lawyers, academics, clinicians and policy-makers. A Tendency to Laugh and Sing is available from the Northumbria Law Press for £24.99 (plus £4 postage and packing). Order your copy here.

While we unburthen'd ...

Health care resources are limited and NHS bodies are often faced with very difficult decisions. In another case about the funding of cancer treatment, the High Court has clarified the parameters within which those decisions must be made.

What we knew already

The courts have long been reluctant to intervene in decisions about the allocation of health care resources. (See, for example: R v Cambridge Health Authority, ex parte B [1995] 1 WLR 898; R v North West Lancashire Health Authority, ex parte A [2000] 1 WLR 977; R (Rogers) v Swindon PCT [2006] EWCA Civ 392.)

• Generally, it is for funders to decide how they will allocate their resources.
• It is almost impossible to challenge a decision to refuse funding where that decision took into account financial constraints and the particular circumstances of the individual patient.
• Where, however, life and death is in issue, the courts will submit the decision making process to rigorous scrutiny.

With regard to decisions about exceptions, some other things were also clear.

• Funders may have a policy only to fund treatments in exceptional circumstances.
• Any such policy must, however, genuinely recognise that there might be an overriding clinical need, and require each funding request to be considered on its own merits.
• Both the policy and the decision-maker must be able to envisage what exceptional circumstances might be. If they do not, the policy will be unlawful: although it has been justified as one of exception, it will in fact operate as a complete refusal of funding.

This case

The new case is R (Ross) v West Sussex PCT (High Court, 10 September 2008). The claimant, Colin Ross, suffers from multiple myeloma and his clinicians want to treat him with a comparatively new drug, Lenalidomide. Other drugs have given him peripheral neuropathy and the court was told that if Mr Ross cannot be treated with Lenalidomide, palliative treatment will be his only option. When West Sussex PCT refused funding, the matter went before a review panel and then an appeal panel. There was evidence that the two panels had misunderstood the effectiveness of Lenalidomide and wrongly calculated its value-for-money, but it was the PCT’s exceptions policy that was at the heart of the case.

Taking exception

The policy began with a dictionary definition of ‘exceptional’, which, it said, means “a person or thing or case to which the general rule is not applicable”. It went on to say that for his circumstances to be exceptional, and for funding to be awarded to him: [a] there must be something about a patient to make him “significantly different to the general population of patients with the condition in question”; and [b] this requirement would not be satisfied where in truth, the patient was merely representative of a wider group. The court said these conditions had led the two panels into error.

The panels had taken the view that the neuropathic side effects from which Mr Ross suffered were well recognised and did not make him exceptional; rather, he was merely one member of a broader class of patients. But the court said this decision demonstrated that the policy was unlawful.

Despite its claim, this was not a policy for exceptional cases, because a person was automatically disqualified if he could be likened to another: in order to gain funding, a patient would have to show, not merely that he was exceptional, but that he was unique.

This was an impossible task, not least because it would always be possible for another patient to emerge who was comparable. It was no coincidence, the court felt, that West Sussex PCT had not approved a single application for funding of Lenalidomide.

The panels had failed to appreciate that even if his neuropathic side-effects did not make Mr Ross exceptional, the implications of those side-effects might: they had robbed him of the only other treatment that might have saved or extended his life.

Comment

A decision to refuse funding for medical treatment will not be unlawful simply because its implications could be grave. But those implications will entitle a court to look more closely at the decision than it might otherwise have been prepared to do. Clearly, the NHS cannot be expected to fund every treatment that science devises, and in deciding where to draw the line, it may have regard to its own resources and look for exceptional circumstances. In explaining what those circumstances might be, however, funders will have to make sure that their policies are not so specific as to exclude from treatment everyone who would benefit from it.

No need for the need for a father?

Artemis

Fertility services licensed under the Human Fertilisation and Embryology Act 1990 (HFEA) must tread carefully. When, for example, they decide whether treatment may be provided to a patient, they must take account of the welfare of any child that might be born as a result and, in particular, consider “the need of that child for a father”. (HFEA, section 13(5))

The Government wishes to introduce a new version of the HFEA and has proposed, amongst other things, that services be required to take account not of the need for a father, but simply of the need “for supportive parenting”. (Human Fertilisation and Embryology Bill, clause 14(2)(b))

It is believed that one effect of this change would be to establish that women may not be refused fertility treatment solely because they are single or in a same-sex relationship. Parliament itself has said that the ‘need for a father’ requirement “was clearly intended to restrict the provision of IVF to lesbian and single women.” (House of Commons Science and Technology Committee, 2005, Human Reproductive Technologies and the Law, HC 7-I, paragraph 99) (There is, however, evidence that it has not had that effect. See: ibid, paragraph 100.)

But for some women, it is already unlawful to exclude them from fertility treatment (and many other health care services). The belief that it might still be lawful to deny such treatment to a woman solely because she is in a same-sex relationship fails to take account of The Equality Act (Sexual Orientation) Regulations 2007. (SI 2007 No 1263)

As their title suggests, these regulations were made under the Equality Act 2006, and they came into force on 30 April 2007. Amongst other things, they deal with ‘discrimination’, which might be direct - using someone’s sexual orientation as a reason for treating her less favourably than others (regulation 3(1)); or indirect - applying to her a condition that would not be applied to others (regulation 3(3)).

Although one of the regulations prohibits such discrimination in the provision of goods, facilities and services (regulation 4), it does not apply to public bodies (regulation 4(3)(a)) and will not, therefore, cover a NHS clinic or a PCT. Another regulation, however, does extend that far.

Regulation 8 of the Sexual Orientation Regulations is very clear. It says, “It is unlawful for a public authority exercising a function [of a public nature] to do any act which constitutes discrimination.” (Regulation 8(1) & (2)(b)) (It might be that an act will not be required, and that even a policy that excluded lesbians from treatment would be unlawful. See: regulation 9.)

It is likely, therefore, that in the case of a woman in a same-sex relationship, a NHS body that refused her treatment on that ground alone would breach the Sexual Orientation Regulations. Given that not just direct, but also indirect discrimination is unlawful, such might even be the case if, before a final decision were made, a clinic or PCT applied the ‘need for a father test’ (or simply had a policy of doing so).

Single women might still have something to gain from the change the Government proposes to make. As far as lesbians are concerned, however, their liberties have already been secured: there is no longer any place for the need for a father.

Update: subsequent events suggest the argument set above has some merit. See here. (Update added 1 March 2009.)