Who gets to decide?

What’s in the bill   

– Single definition of capacity. 

– Capacity to be assessed for each decision. 

– Checklist for considering a person’s best interests. 

– A general authority to act where reasonable and in best
interests. 

– Lasting Powers of Attorney (LPA) which enable decisions on
welfare, health care and financial matters. 

– A system of court-appointed deputies where no LPA. 

– Advance decisions to refuse treatment. 

– New dedicated Court of Protection. 

– New criminal offence for ill-treatment of a person who lacks
capacity.

Earlier this year Victoria Willson was taken to hospital
after losing blood. Medical staff there said Victoria, who has
profound learning difficulties, was having a miscarriage. Her
accompanying support worker explained that it was highly unlikely
that Victoria could be pregnant but the medical staff refused to
listen and set about preparing to treat her as if she was. As it
turned out, the hospital was wrong. Victoria, who suffers from
complex medical conditions, wasn’t pregnant but bleeding from her
kidney.

Victoria’s mum, Jean, was upset that the hospital staff had jumped
to conclusions and failed to listen to the support worker who knew
her daughter so much better than they did. But it was not the first
time such a situation had arisen in her daughter’s 33 years. Last
year, Victoria was taken to hospital with seizures. Doctors were
struggling to control the seizures and started to question her
quality of life. But Jean says: “I work in the profession so I know
how the system works. If I’d not been so forceful they would have
let the convulsions take their natural course.”

Jean jokes that in these circumstances “the flying squad has to
come in and rescue her.” But in reality she knows that the
situation is far from funny. She has high hopes that new mental
incapacity legislation will improve the way decisions are made for
people like her daughter, who are unable to make them for
themselves.

The government’s draft Mental Incapacity Bill, which was published
last month, allows for welfare and health care decisions to be
taken on behalf of people who lack capacity, in addition to
financial decisions that can already be taken by others in certain
circumstances.

It must be assumed that a person has capacity unless it is
established that they lack it.ÊA person is considered to lack
capacity if they are unable to make a decision “because of an
impairment of, or a disturbance in, the functioning of the mind or
brain”. They could be a person with learning difficulties, or with
mental health problems, or with a brain injury or a disease that
affects their capacity for decisions.

For day-to-day decisions, the bill sets out a “general authority”
which allows a person to act on behalf of an individual with mental
incapacity where it is reasonable to do so and is in the person’s
best interests. More formal decision-making powers include a system
of lasting powers of attorney (LPA). This enables an individual to
appoint someone to make welfare, health care and financial
decisions on their behalf, should they lose capacity in the future.
For people without the capacity to grant LPA, a court would be able
to appoint an equivalent deputy.

So, what do people think? The Making Decisions Alliance, a
coalition of 25 voluntary sector organisations, has been
campaigning for mental incapacity legislation for 14 years.
Co-chairperson Richard Kramer says the Bill matches up to
expectations and provides the right framework. But he is concerned
that advocacy should play a more significant part.

“If the government is serious about helping people to make
decisions, it needs to invest more in advocacy and promote
organisations that provide it,” he says.

Advocates could be someone who knows the person well or could be
independent and from an organisation, but they should not be a
family carer. Generally they should be unpaid to ensure they have
no financial interests in the decision-making.

Kramer also feels that the government needs to look at the issue
from a different angle. “There’s an emphasis on defining incapacity
and the basis on which a person can’t make decisions. We want the
government to think more about how to support people to make the
decisions they are capable of making,” he says.

Methods of communicating that use pictures, short sentences and
boards, which depict a yes or no answer, can be useful. And even if
a person is unable to make a decision, they can still play a part
in the process. Kramer cites the example of someone showing
distress about moving to a day centre. “It may be clear from their
distress that they don’t want to be in a day centre and this should
be notified and taken into account in the decision-making.”

Making sure that everyone has a say in the decisions that affect
them is, understandably, something that people who have learning
difficulties feel strongly about. National learning difficulties
organisation People First fiercely opposes the bill and has been
resisting any such legislation for the past 10 years.

Its director Andrew Lee says people with learning difficulties feel
that parents have too much power as it is, and are worried that
parents and carers will pick and choose the parts of the law that
suit their own needs. He also questions whether people with
learning difficulties will be able to challenge decisions, and
relates how just last week his organisation took a phone call from
two distraught parents who had been separated from their newborn
son.

“After the birth the doctor checked the baby over and instead of
handing him over to the mum or dad handed him over to the social
worker and said ‘you’re incapable of being parents. This child is
going into protective care’,” he says.

In Lee’s opinion the bill not only goes against everything that
Valuing People stands for but also conflicts with the Human Rights
Act 1998. He says: “This bill takes away people’s ability to
choose. If Tony Blair allows it to go through then we seriously
question his commitment to Valuing People. I warned the minister
that if this Bill is forced through then I expect people with
learning difficulties to be out on the streets.”

Another grey area that the bill aims to clarify relates to advance
decisions. Under it an individual, while capable, would be able to
set out in advance the treatment that they would not want to
receive should they lose capacity in the future.

Being able to plan for a loss of capacity can be particularly
relevant to people with fluctuating mental health problems. Many
service users are able to make decisions during problem-free
periods and have long called for the right to set out what they
want to happen during times of distress. However, the proposals
only allow individuals to set out in advance the treatment they do
not want to receive rather than treatment they do want.

And this has been a disappointment to some. Peter Beresford,
chairperson of service user involvement group Shaping Our Lives,
says people tend to frame their lives in terms of what they like
rather than what they don’t like. He would prefer there to be a
more positive emphasis within any framework for advance
decisions.

He worries that a person’s capacity to make decisions could be seen
unfairly as a permanent personal characteristic, like the ability
to read music or ride a bike. “Of course the capacity to make a
decision at any time, even in a crisis, depends on external
circumstances and the people that are around to help you.”

In his view, being able to plan ahead could make life easier for
people who know they may become distressed again, but is less
useful where mental health problems are unexpected.

The Mental Incapacity Bill now faces parliamentary scrutiny – an
unpopular move with those who were expecting a further consultation
period. Its progress after that is yet to be decided, but
supporters hope it will be included in the Queen’s speech this
November which will set out the priorities for the new
parliamentary session.

Government legislation is seldom perfect, but at least in this
case, many feel that what is being proposed is preferable to the
status quo.

Case study: Jason’s welfare 

Jason Phillips is pleased that his father, Louis, may have more
control of his life under the new legislation.   Jason, 28, has
learning difficulties. Louis plans to apply to the Court of
Protection to become a deputy, which would enable him to make
welfare, health care and financial decisions on his son’s
behalf.  

At the moment, despite their close relationship, Louis has no
right to make these decisions. He believes the system is flawed,
with parents of children with learning difficulties excluded from
major decision-making once their child turns 18.  “It’s ridiculous
inasmuch as a person is involved from day one but then from a
certain age you become powerless,” he says. 

But Louis and Jason count themselves as being among the lucky
ones. Louis has a good relationship with Sybden House, the home run
by charity Turning Point where Jason lives, and generally feels
included in Jason’s life. Day to day, the new legislation is
unlikely to have much effect, other than in formalising Louis’s
role. 

It is in relation to bigger decisions that the changes are
likely to give Louis a greater say over what happens to his son. At
the moment, if Jason needs any significant medical treatment a
consultant – not Louis – must give consent. This concerns Louis,
who feels the consultant is more likely to think in terms of
statistics than in terms of the individual.  “The consultant does
not know me, Jason or anyone. That’s the political football that’s
kicked around,” he says.

Path to legislation   

– 1989: The Law Commission’s six-year consultation on mental
incapacity starts.  –

– 1995: The Law Commission publishes report and draft bill. 

– 1997: The government responds with the green paper Who
Decides? 

 – 1999: The government publishes the policy statement Making
Decisions. 

 – 2003: Draft Mental Incapacity Bill published.