Mental Capacity (Amendment) Bill [HL]

Written evidence submitted by Wendy and Graham Enderby (MCAB76)

Re: Mental Capacity Act (Amendment) Bill

To introduce ourselves, we are the carers for HL (HL v UK ECHR 2004) and have been involved with the DoLS processes throughout the introduction of Schedule A1 and the Code of Practice brought in 2009.

Graham has also worked as an IMCA and Paid RPR over many years and understands what is actually happening on the ground and where problems exist for all the parties involved in an authorisation process.

We have always been critical where we observe bad practice and failure to uphold the person’s rights. Reading through the proposed Mental Capacity Act (Amendment) Bill and following the passage through the parliamentary process so far has been very depressing and leaves us feeling extremely frustrated and angry that the work we started in 1997 and the protections for the person that came about from this work is now being thrown away by this government Bill.

The lack of any of the protections we have argued for individually and collectively which at least had a fair hearing when we were privileged to give oral evidence to the JCHR and we believe mostly reflected in their recent paper appear to have been completely ignored as has most of what the JCHR had to say.

Article 5 rights include ‘speedy access to a court’ to challenge a deprivation of liberty and case law says that the person just not only have the right to challenge but they should be ‘enabled’ to do so. It appears so far that the government is determined to deny people with very little autonomy the rights to which they are entitled. This is unacceptable and the bill must include a statutory right to have assistance at the very earliest opportunity to ensure that the person’s rights are given priority.

It also completely useless to give people a dubious route to challenge a decision about being admitted to a care home or hospital after the event. Everything must be done before that decision is made – even the Law Commission recognised that.

We have talked at length over many years about capacity assessments, the person’s wishes and feelings and representation for the person and family at the outset of the process. The representation of family or the person seemed to be something we don't think the government want to hear or take notice of. Demonstrated by the lack meaningful IMCA, RPR or equivalent involvement as set out in the Bill.

We say anything less than JCHR recommendations and (nearly) all the Law Commission proposals would be a reduction in the value of the person's individual rights and against the concept of MCA and even the existing DoLS.

We have been asked whether we thought it was necessary to replace the DoLS at all. We have to say that if there was a more robust definition of deprivation of liberty then the original process wouldn't need much changing and we think we are right from our reading of this Bill.

The backlog and expansion that makes the current situation untenable is evolving case law and Cheshire West varying interpretations of deprivation of liberty. There is nothing in the Bill (or even the Law Commission proposals) that makes us believe the new version will be any less bureaucratic except the Bill removes so much protection that it must be cheaper as the person has nearly every right removed and a care home will do what they can to remove the rest either by intention or ignorance.

We can only hope that the Committee share our concerns and carry on providing robust opposition to the proposals as they stand and influence the changes that need to happen to put the person at the heart of the protections and provide the scheme with robust independent scrutiny at the time things are happening to the person and not after the authorisation.

It is bizarre that the Court of Protection gives authority to deputies to exercise control over the person’s accommodation and care provision and then as this bill stands stops them from exercising that right relegating them to a consultee role only and not having any real power in the process.

There is nothing in this Bill to demonstrate that the person is really at the centre of the process and nothing that categorically states that the person’s wishes, feelings and past decisions must be taken into account. Nothing that allows interpretations of capacity to consent based on behaviour and expressions of contentment and happiness displayed by those who are challenged in communicating in anything but legal language and it is imperative that serious change must happen. Why should a person who is able to demonstrate contentment with one set of surroundings and distress at another set of circumstances as in the case of HL be continuously expected to demonstrate to random strange professionals their contentment in their preferred environment to the satisfaction of a single one off professional making a judgment on someone they have never met before and not likely to meet again.

If the person is living in own home who when had capacity did not wish to enter residential care but agreed to have home care visits, they should not be regarded as being deprived of their liberty just because they lose capacity. Deprivation of Liberty Safeguards refer to care ‘imputable to the state’, Home care in virtually all cases will not amount to more than 4 half hour visits per day, it is disproportionate to say that means a person is deprived of their liberty when they are not subject to state control for the other 22 hours of the day.

If the person lives in the family home being cared for by family members they may be restricted but not deprived necessarily.

It is very important to remember that there are a huge numbers of families caring for relatives at home under sometimes very difficult circumstances and where the cared for person is well supported and everyone is happy with the arrangements. What would it achieve to put these cared for persons under LPS?

Apart from the huge expense to the state to bring in blanket restrictions it would be an infringement of the whole family’s Article 8 Rights and there is a risk that too much state interference will deter family members taking on this valuable commitment and more people will end up in residential care which will certainly deprive them of their liberty.

The words used by Lady Hale in Cheshire West judgement If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, is not the language you would use if you were describing living in your own home and we believe we are right that there should not be a need to authorise a deprivation of liberty in a person’s own home unless there are excessive restrictions and then perhaps it should be the Court of Protection that authorises this rather than LPS or DoLS procedures.

The aim of this Bill is to cut the costs that the current system, we are told, commands.

The government appears to be achieving this by cutting out everything that costs money: the ability to object to care arrangements, the limited access to advocacy, the reduced access to independent opinion and reduced access to court and the limited access the person has to information and independent representation generally – the person lacking capacity ends up having no useful or meaningful rights at all.

Perhaps it would be useful to go back to Chapter 2 of the Deprivation of Liberty Safeguards Code of Practice and review the meaning /description of measures that might singularly or collectively amount to a deprivation of liberty. This allows each case to be looked at for the individual and as well as the often quoted ‘necessary & proportionate (and in person’s best interests) there is the less quoted idea that deprivation of liberty is not merely one of nature and substance but one of degree and intensity.

The Bill as we know virtually takes away the concept of ‘best interests’ so allowing the procedures to not take into account a person’s wishes and feelings past and present. If the government is serious about bringing back the necessity to properly consult with the person then surely that must bring back best interests and so it should. Strengthening the wishes and feelings would be the Joint Committee on Human Rights proposal on ‘valid consent’ this in turn would significantly reduce the number of people who would fall under LPS

Our ‘acid test’ is:- If HL v Bournewood happened today under these proposals would he be any better protected than in 1997 or under DoLs? Given the attitude of the professionals employed by the hospital / managing authority at the time, the MCA amendment Bill places more control in the hands of those professionals and less consideration of HL and those that were trying to get him out. It is then as it stands a monumental fail in its current form.

The current system is about Safeguards for people deprived of their Liberty. The new proposals remove all those safeguards a person has and in effect ‘safeguards’ the state agencies rather than the person. This is completely unacceptable and must not be allowed to happen. It is imperative the government get it right this time.

We will be very pleased to meet with you and discuss these concerns and any queries you may have or provide further information including some possible solutions to the current situation if you think that would be helpful to you.

Yours sincerely

Wendy & Graham Enderby

January 2019


Prepared 22nd January 2019