17 June 2005

1. The National Autistic Society (NAS) is the leading charity for people with an autistic spectrum disorder (ASD) in the UK. It has a membership of over 12,000, a network of 60 branches, and 90 partner organisations in the autism field. The NAS is in a unique position to comment on issues affecting people with autistic spectrum disorders because it operates in all four nations of the UK. The NAS exists to champion the rights and interests of all people with autism and to ensure that they and their families receive quality services, appropriate to their needs. There are approximately 535,000 people with autistic spectrum disorders in the UK. 

2. We welcome the work the government is undertaking to address the Bournewood gap and the opportunity to comment on the consultation. We recognise that this consultation raises a number of complicated issues that are not easily resolved.  Below is a discussion of the more general issues that concern us.  This is followed by specific responses to some of the questions raised in the consultation document.

General

Ensuring the involvement of practitioners and others with knowledge of Autistic Spectrum Disorders

3. We believe that it is essential that those individuals making the decisions on behalf of a person with an ASD understand the complex nature of the condition.  This applies with respect to the initial assessment of capacity and the decision as to what action to take, as well as those making decisions in court proceedings or representing the individual as an advocate.

Confusion between the Mental Capacity Act and Mental Health Legislation

4. This consultation demonstrates the need to address the overlap between the Mental Capacity Act and mental health legislation. We are concerned that there is still considerable potential for confusion between which system/legislation would apply in which circumstance. This is, in part, a result of the following:

  • either Protective Care or the Mental Health legislation could apply if an individual comes under the remit of the mental health legislation but is compliant while incapacitated;
  • fluctuating capacity could mean people shift between systems (although we acknowledge that the consultation notes that this would be undesirable); and
  • if only a restriction of liberty occurs, an incapacitated compliant patient is covered by the provisions of the Mental Capacity Act, but if deprivation of liberty occurs then the provisions emerging from this consultation will be necessary. Further guidance is needed as to what constitutes a deprivation of liberty as opposed to a restraint of liberty. There would also need to be clarity as to what circumstances constitute grounds for depriving someone of their liberty.


5. The outcome of the consultation may address this concern, but if flexibility is allowed for then it is essential that guidance clarifies which system would apply in different scenarios. 

6. This consultation provides an opportunity to create a more unified framework between these two key pieces of legislation and ensure that those individuals lacking mental capacity are accorded the protections available to individuals with capacity.

Dealing with a flux in capacity

7. We believe that it is necessary to have sufficient regard, when finalising the proposals, to those individuals whose capacity may be in flux.  While it is proposed that the Protective Care procedures can be instigated not only on admission but also at a time when deprivation of liberty occurs (presumably accounting for a loss of capacity over time), we believe that the outcome of the consultation should be a system capable of addressing circumstances in which there can be quite rapid changes in capacity both positive and negative.

Treatment

8. Although the Bournewood consultation is primarily concerned with detention, we believe that the opportunity should be used to put in place sufficient safeguards in relation to treatment and care.

Question 1: The population affected

How many people of unsound mind who lack capacity might be deprived of their liberty each year: in what settings could they be found and how might we identify how many people are affected? In particular, how realistic are the estimates set out above; and how many temporary admissions to care homes might fall within the Bournewood Group? What will be the extent of the additional demand placed on clinicians and others?

9. The need to ascertain initial capacity has not been expressly considered as it is assumed that those individuals to which this scenario applies lack capacity. However, if the procedures are to be in keeping with the presumption of capacity established in the Mental Capacity Act 2005, there would be a requirement for a test of capacity.  This seems to require additional resources, the extent of which would be dependant on what the nature of the capacity test is.

10. As the Mental Capacity Act does not specify the nature of the 'assessments', just that there would be a test to see whether someone has the capacity to make decisions, its not yet apparent what role clinical assessment will play, if any, in the functioning of this Act. The reference to second medical assessments in this consultation does not make it clear what is meant or when it would be needed.  The capacity of individuals with ASDs is difficult to assess without a good understanding of the condition and experience of working with individuals on the spectrum. 

11. While we support the presumption of capacity and the requirement to assess capacity, we are concerned that the existing professional services would not be able to cope with a significant increase in assessments. There is a national shortage of appropriately qualified chartered psychologists now and a dearth of psychiatrists working in this area. Many care homes have no access to appropriate psychiatric services. When considering ASDs the picture is even bleaker as few psychiatrists are experienced in working with ASD.  This shortage needs to be considered in the context of the Bournewood consultation and the provision for Codes of Practice in the Mental Capacity Act.

Question 2: Framework for future Government policy

Are the right issues addressed in the framework for developing Government policy for Bournewood set out in para 4.1: how valid are the assumptions set out in para 4.2?

Question 3: Protective care

How should the Government best use Protective Care powers to tackle the Bournewood issue?  Are the suggested topics to be covered in procedures and arrangements to be put in place under such powers the right ones, and what needs to be done under each of the topics? 

12. We welcome the Protective Care proposal.  As there are a considerable number of undecided variables concerning the extent, coverage and location of what is proposed we have attempted to set out our views based on some of the possible scenarios/circumstances (these are not comprehensive).  However, our principal concern is that protective care should provide comparable safeguards to those available under the Mental Health Act.

Protective Care should, through an amendment to the Mental Capacity Act, provide a system of safeguards for those incapacitated individuals deprived of their liberty which is equivalent to that currently available under the Mental Health Act

13. This is the National Autistic Societys preferred option.  We believe that primacy should be given to the Mental Capacity Act for all patients who lack capacity, if the following conditions are met:

  • that the protective care proposals are placed under an appropriate legislative framework, with an amendment to the Mental Capacity Act
  • that the protections under the Protective Care system are comparable to those under the Mental Health Act (including those on treatment).


14. There are minimum protections that we would expect to see in place if the Protective Care option is to be applied to all individuals who lack capacity, including those covered by the Human Rights Act. In particular, we would like the Protective Care system to provide for:

  • appeal rights against detention;
  • a second opinion on treatment options;
  • a right to a care plan and a review of that care plan;
  • an independent advocate to be available- who has the right to apply to the court of protection; and
  • inspection arrangements (perhaps extending the remit of the Mental Health Act Commission).


15. If, as we believe, the Protective Care measures should resemble those under the Mental Health Act, there is the question of whether this would be suitable for Care Homes. We are concerned that Protective Care, as we see it, could be perceived as overly bureaucratic for care homes. This potentially raises the question of whether it is possible for there to be a different type of safeguard procedure applying to care homes as opposed to hospitals.  This is a complicated issue. However, one option could be to avoid/limit the situation where deprivation of liberty occurs in Care Homes. The government could issue guidance to Care Homes setting out procedures to follow to avoid placing individuals under deprivation of care. This would allow for a different procedure to hospitals and would place individuals in care homes under the protections established in the Mental Capacity Act. If those procedures are not met then the individual could be placed under a protective care order.

Flexibility between the Mental Health legislation and the Mental Capacity Act

16. If the outcome of the consultation allows for flexibility between the Mental Health Act and the protective care proposals then we believe comparable safeguards should be provided for both sets of individuals. 

17. If the Protective Care arrangements are not given an appropriate legislative framework then we would expect that individuals with a mental illness would continue to be treated under the Mental Health Act. 

Different safeguards

18. If the safeguards under Protective Care do differ from those offered under the Mental Health Act, then, at a minimum, all individuals with a mental illness who currently qualify for sectioning under that Act should be detained under the Mental Health Act.  Under this scenario, there could be an overarching review body with a remit to decide which Act individuals should be placed under.

Question 4: Arrangements for reviews of detention

What should the role of the courts and tribunals be?

19. Our views on this and some of the following questions, particularly Q5, would depend on the coverage and nature of the Protective Care proposal and so these responses are provisional.  We have responded to these questions on the assumption in 5.7 that there would be some flexibility between the two systems.

20. We believe that the role of courts and tribunals could be relatively minimal, as long as there is an official forum in which contentious issues can be settled.  We believe, though, that there should be safeguards to ensure that vulnerable individuals with no family or carers have an experienced advocate to represent them. 

21. Only suitably qualified and experienced people from the field should be making judgments.  This will have resource issues.

22. Our experience is that Mental Health Tribunals are under enormous strain at the moment and as a consequence, there is widespread dissatisfaction with these tribunals.

What might be the most appropriate mechanism and procedures for reviewing the detention of people of unsound mind who lack capacity and who are deprived of their liberty?

23. The Court of Protection or the Mental Health Tribunal are both options. It will be important to ensure that sufficient resources are allocated to whatever mechanism is decided upon.

Question 5: Scope for alleviating pressure on courts or tribunals

To what extent might the concerns raised in the Bournewood judgment be met by having a 'first-tier' review with the involvement of an independent person in the review process, and how should the process operate?

24. We believe that the idea of a first tier review is a viable option and would support this if certain safeguards were in place, including:

  • a strong independent element;
  • the involvement of professional advocates in presenting issues- with specific protections in place for the most vulnerable;
  • suitably qualified experienced people making the judgments; and
     recourse to appeal mechanisms.


25. The exact power of such a body, whether decisions are binding and what happens to the person in the interim all require further thought.

Question 6: Role of carers, friends and relatives or advocates

What rights, responsibilities and roles might carers, friends and relatives or advocates have?


26. The Mental Capacity Act 2005 establishes under Section 4(7) that decisions made in the best interests of the individual should, as far as appropriate and practical, take into account the views of those: with a caring role for the individual; interested in the welfare of the person; and the person concerned has named as someone to consult.  We believe that this also applies in the circumstances covered here.

27. We also strongly believe that anyone subject to a Protective Care Order should have the right of access to an advocate. In the case of ASDs this will need to be someone with knowledge of the condition.

Question 7: Monitoring of implementation

What arrangements might be made for monitoring the new processes that are put in place to address the Bournewood gap?

28. We agree that there should be inspection arrangements in place to monitor the new arrangements.

29. We also suggest that data should be gathered on the outcomes of individual cases- considering the circumstances in individual cases and the decisions made in those situations.  This would allow comparison of protective care with sectioning.

30. There should be a well designed piece of research that can:

  • sample and examine cases;
  • seek views of interested parties; and
  • look at outcomes for matched groups.


31. In addition to this, we suggest that the Department of Health statistics department collects information on the number of people detained under the various classifications and how this changes over time.

Question 8: Extending the use of detention under the 1983 Act

In the light of the Bournewood judgment, to what extent would it be desirable to extend the use of sectioning people of unsound mind who lack capacity and are deprived of their liberty, under existing mental health legislation.

32. We do not believe that simply extending the use of detention under the 1983 Act to all consenting incapacitated patients is the solution to Bournewood.  This would be an excessive use of the power to section individuals.  There are disadvantages to sectioning, including that it is poorly understood and feared by many. 

Question 9: Using existing arrangements for guardianship under the 1983 Act

What would be the advantages and disadvantages of extending the use of guardianship in respect of people of unsound mind who lack capacity? What changes to current legislation would be needed to make this a feasible option?

33. We do not support the extension of the guardianship scheme to people of unsound mind who lack capacity.  There are a number of difficulties with this proposal including that: it offers insufficient protection; the role of the Local Authority does not offer sufficient independence; and it would require considerable changes to a scheme already experiencing difficulties.