Appendix 6.2 - Background information
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)
is where people are employed and paid within an advocacy service.
This usually follows a case-work model, focussing on particular
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
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.
18.104.22.168 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
6.2.8 Case study 3 - advocacy in the communication
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
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
22.214.171.124 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
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
126.96.36.199 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.
188.8.131.52 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
184.108.40.206 Q. How would you ensure advocate is independent
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.
220.127.116.11 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.
18.104.22.168 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.