Written evidence from Mencap (REV 08)
Mencap is the UK's leading learning disability charity,
working with people with a learning disability, their families
and carers. We want a world where people with a learning disability
are valued equally, listened to and included. We want everyone
to have the opportunity to achieve the things they want from life.
MENCAP'S
RESPONSE
Mencap believes that revalidation needs substantial
overhaul if it is to truly protect all patients, including those
with a learning disability. This work needs to also be considered
in the context of improving the fitness to practice work of the
registering bodies.
At present, people with a learning disability experience
significantly higher levels of illness than the general population,
including diabetes, asthma and heart conditions. People with a
learning disability are 58 times more likely to die before their
50th birthday than the general population.
Doctors, working in any healthcare setting, have
a critical role to play in ensuring that patients with a learning
disability are able to not only live longer, but also live healthier.
Revalidation is crucial in ensuring that healthcare delivered
to all patients, including those with a learning disability, delivers
consistently high outcomes. Current GMC proposals round revalidation
are too heavily weighted in favour of the convenience of doctors,
rather than ensuring better outcomes for patients.
Mencap are pleased that the Health Select Committee
has chosen to look at how the revalidation of doctors works. Mencap
believes that revalidation needs substantial overhaul if it is
to truly protect all patients, including those with a learning
disability.
Healthcare for All (commissioned by the Department
of Health in response to Mencap's Death by Indifference report)
highlighted revalidation as a key method for driving standards
of care and avoiding premature death. While the Department's recent
6 Lives Progress Report (2010) showed that there have been
improvements to services, families across the country still continue
to tell Mencap about the poor experience they have received from
many doctors, including:
- Doctors making little effort to communicate with
a patient with a profound and multiple learning disability.
- Carers saying that input is routinely ignored
by doctors.
- Evidence of doctors making prejudicial quality
of life assumptions, particularly around Do Not Resuscitate orders.
- Frequent diagnostic overshadowing by doctors,
who see the disability and fail to act early to tackle the underlying,
and often worsening, health condition.
Mencap believes that improving health outcomes for
patients with a learning disability will require both an attitudinal
shift as well as a strong and inclusive revalidation process requiring
doctors to make reasonable adjustments. Mencap believes that doctors
should be asked to provide evidence as to how they have made reasonable
adjustments for people with a learning disability (as well as
their carers) in order to be revalidated. Such evidence could
look at how doctors have adjusted their practice in ways such
as:
- Intervening earlier when coming into contact
with a patient with a learning disability, particularly when the
patient is non-verbal.
- Doctors' level of understanding by the doctor
of mental capacity legislation.
- As well as some of the more "low level reasonable
adjustments" including: information provision, longer appointment
lengths, linking with community teams (or secondary medicine)
- and how these have led to better health outcomes.
Mencap believes all doctors should be able to consistently
offer good care for all patients. Current GMC proposals appear
to be far too weighted in favour of not inconveniencing doctors.
They make almost no reference to patient safety - a clear omission
in Mencap's view.
The proposed GMC timescale for revalidation of five
years also feels too far tilted towards the interests of doctors
and institutions rather than ensuring the confidence of patients
with a learning disability.
Mencap welcomed the GMC proposals for engaging the
public in the revalidation of doctors. Their consultation proposed
that patient views would be garnered through patient survey, conducted
by the hospital or GP surgery. This poses three difficulties:
- Having a learning disability necessarily means
having a difficulty in communication - extra effort needs to be
made to record the views and experiences of patients with a learning
disability.
- If a person's experience with a GP has been poor,
the willingness of the patient or to engage with an survey not
in accessible formats (such as easy read pictures and symbols)
is likely to be low.
- Those that experience the worst outcomes may
be least well represented in patient feedback.
Mencap believes revalidation should make explicit
reference to the fact that for many people with a learning disability,
written communication is not possible and other options, including
support, should be offered as a routine.
CONCLUSION
The rights of patients with a learning disability
are protected by law.
It is vital that revalidation ensures that doctors
provide practical evidence as to how they have made reasonable
adjustments for patients with a learning disability, if we are
to continue to drive up health standards.
November 2010
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