Joint Committee on the Draft Mental Incapacity Bill Memoranda


Appendix 6.2 - Background information on Advocacy

Successive Governments have highlighted the importance of independent advocacy and showed an appreciation of the valuable role it can play in supporting people to access vital services and ensure their rights are protected. For example, the Disabled Persons Act 1986 charged local authorities with setting up a formal system of authorised representatives who could make representations about their disabled people's need for services, get a statement of assessed needs and services to be provided and make representations about this. However, this formal system was never implemented.

6.2.1 More recently, the Health and Social Care Act 2001 (part 1, section 12, clause 19A) empowers the Secretary of State 'to arrange, to such extent as he considers necessary to meet all reasonable requirements, for the provision of independent advocacy services.' This Act also introduced two new mechanisms to deal with health service complaints, PALS and ICAS. A similar clause exists in the draft Mental Health Act in relation to the help to be available from mental health advocates to qualifying patients and to their nominated persons.

6.2.2 In addition, numerous white papers, standards, guidance documents and reports from different Government Departments have drawn attention to the benefits advocacy can bring and emphasised the need for further development and support for such services. However, apart from the limited funding announced in the White Paper Valuing People for services aimed at people with learning disabilities over the next 3 years, there has been no indication of any national Government funding or resources for independent advocacy services.

6.2.3 Some models of advocacy

Citizen Advocacy is a one-to-one ongoing partnership between a trained volunteer advocate and a person who is not in a strong position to exercise or defend their rights and is at risk of being mistreated or excluded.

Peer Advocacy is where one person advocates for another who has experience or is experiencing similar difficulties or who has similar life experiences (e.g. service users in a residential facility)

Professional Advocacy is where people are employed and paid within an advocacy service. This usually follows a case-work model, focussing on particular issues.

6.2.4 If someone already has a Citizen Advocate they know and trust, they should be able to use this support in this situation if they so wish and if the advocate is willing to do so rather than be required to use a paid professional advocate. Similarly, if someone wanted to have a Citizens Advocate but there are no such schemes in their area but paid professional advocates were available it would be reasonable for them to accept this as an alternative.

6.2.5 Advocacy Case Studies

Case Study 1 - advocacy as a safeguard against potential abuse

A man in his mid-60s has a previous history of long-term institutional admission from his 20s to late 40s. During a hospital admission a neighbour was very active in arguing for him during discharge planning and agreed to provide regular weekly support. At the meeting the gentleman did not challenge this but was still very anxious about going home. It later emerged that the neighbour had encouraged him to sell his family home to move into a bungalow near her so she could 'provide support'. In return, he had invested in an extension for her property.

6.2.6 As time went on, the promised support from the neighbour never emerged. He had been unhappy with the discharge planning at the time, but had never felt comfortable saying anything in front of his neighbour. He didn't want to upset her, as he was still hopeful that she would provide ongoing care. Due to his history of institutionalisation, he was continually scared of getting into trouble for whistle-blowing. Everyone assumed that the neighbour was advocating for him; nobody realised the neighbour wasn't independent. Nobody actually asked the gentleman independently whether he was happy with the arrangements that had been made. An independent advocate would have asked all those important questions.

6.2.7 Case study 2

The following case study is an example of how someone's condition and their life experience to date have both had an impact on their ability to make decisions.

6.2.7.1 A young woman with Asperger syndrome had many different placements throughout her school life and early adulthood. Her ability to make decisions was affected by these changes in surroundings. She felt was unable to control major decisions in her life, such as her placements, and, because the settings were not appropriate, her reliance on her obsessions (personal hygiene and domestic cleanliness) became more acute. The reassurance she found in her cleaning adversely affected all the other decisions she made — cleanliness was the only thing that mattered to her. As she became more settled in a more suitable supported living arrangement, her obsessions declined and she was able to engage in other activities - college, gym etc.

6.2.8 Case study 3 - advocacy in the communication process

A non-verbal man with autism attended an autism specific day service in a neighbouring local authority. It had always been assumed that because of his lack of language and his apparent indifference to his surroundings that he was incapable of making certain decisions. When his local authority decided that it would be cheaper for him to attend one of their own generic day centres for disabled people the day centre appointed an advocate. It soon became clear to everyone involved that he had understood what was happening and wanted to stay at his present day service. Through specific questions and his use of symbols the advocate was able to ask him about his current day service and how it helped him.

6.2.9 Case Study 4 - advocacy assisting in the expression of preferences

A man who suffered a mental breakdown at university is now paranoid about his immediate family, who are doing their best to help him. However, he sees any support they suggest as oppressive and detrimental to his interests. He is very intelligent and can communicate well, but his views are distorted through his delusional beliefs. An independent advocate is needed to help him express his preferences to enable decisions to be made in his best interests.

6.2.10 Case study 5 - advocacy in the process of gaining consent

A young man with autism and very little language needed a hernia operation and was in a great deal of pain. Because of his autism he hadn't alerted anybody to the pain he was suffering. Staff began to notice his discomfort and he went to a doctor. He lived in an autism specific residential service and the staff, his parents, his psychologist and surgeon agreed he needed the operation. However without the use of an advocate it was agreed that consent could not be assumed. The advocate was able to explain impartially the consequences of an operation. Following access to an advocate he gave consent and the operation was successful.

6.2.11 Case study 6 - Advocacy in challenging professional decisions

A lady in her mid 90's was living alone in warden accommodation. She was physically ill but refused on several occasions to go into hospital. It was unknown how serious her illness was due to lack of tests (which could only be done in the hospital) - it may have been a minor blockage that could be easily rectified, but it could also have been something much more sinister. Due to past history the lady was adamant she did not want to leave her home as she was very clear that she wanted to die in her own home. She was aware that she may be shortening her life by this decision but for her the potential benefits of a move into hospital did not outweigh the fear of going there. The GP became very anxious about this and instigated a Mental Health Act assessment, the GP tried to argue there were questions over the lady's capacity but it seemed much more to be a case of 'covering the back' by the GP.

6.2.11.1 The lady was very traumatised by the experience of many strangers entering her home and asking very personal questions. There needed to be someone in this process very clearly advocating for her wishes to stay at home, as her wishes seemed to be totally lost in this process. The concern would be that a GP under the new system would act under the General Authority and remove her into hospital, as the lady herself could express her wishes if given the time and space and when asked appropriately but was too weak to really challenge anyone. An advocate would have clearly been able to challenge the GP's concerns and any 'medical' decisions that he made.

6.2.12 Case study 7- advocacy in family disputes

A man's health was deteriorating; and his insight and ability to communicate were severely diminished. There was an on-going dispute between his sister and father and his wife when he became ill, which resulted in a long battle to register an EPA. The family said they were quite happy for his wife to handle all financial and business matters with the EPA not being registered. However, the family then started to take him to meet with solicitors and clerks, seeking revocation of the EPA when he visited them, causing much friction. An independent advocate may have helped to establish and communicate his views.

6.2 13 Frequently Asked Questions on Advocacy

6.2.13.1 Q. How can you advocate for someone whose views on the particular issue can't be established?

A. You can build up a picture of a person's views and preferences from their behaviours and the way they react to different things. From that, it is possible to work out what they may prefer to happen and what makes them happy. It is however very important for advocates to make it clear when it is not possible to ascertain someone's wishes and feelings.

6.2.13.2 Q. How can you get the views of preferences of people who are mentally incapable?

A. Mental capacity isn't a black and white issue. Someone may be capable of making some decisions and not others, or may not be capable of making many decisions but could be able to express views or preferences that can help guide the actions of the substitute decision-maker. An independent advocate can help explain to someone in a way they are more likely to understand what the decision is about so that as far as possible their views are considered.

6.2.13.3 Q. How would you ensure advocate is independent and accountable?

A. The independence of the advocate is important to the success of the advocacy. Work needs to be done by organisations providing advocacy to establish how advocates can guarantee independence and accountability for the individual. But we need to make sure that the possibility of informal advocacy is not removed through any formal process of ensuring independence and accountability.

6.2.13.4 Q. Who should be responsible for providing and / or resourcing this advocacy input?

A. Central Government should fund the provision of independent advocacy support needed to make the commitment in the Bill to a presumption of capacity a reality.

6.2.13.5 Q. How much would this cost?

A. No accurate figures are available. However, the MDA believes that every local authority area should have an independent advocacy service that is able to support people who are affected by the Bill. For some areas, this will be new provision. For others, existing services would need to be enhanced. It should also be borne in mind, however, that many of recommendations are about providing access to advocacy for those who do not have alternatives. Most people will probably continue to use informal advocates (family, friends, and neighbours) with no substantial cost implications.


 
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