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Minutes
of the Apologies:
Carol
Herrity (Mencap); Speaker:
Jessica Allen ( IPPR)
Choice, Devolution and Equity (See
appendix for Powerpoint slides) 1.
Minutes
of last meeting 2.
Minutes
of Management Committee held on 16th November 2005 Jonathan
Ellis reported that technically the Patients Forum was currently without
a Chair. He said that he had
been continuing as Vice-Chair over the previous few months having done
his turn - three years -
in the Chair. The
absence of a Chair had been discussed when the Management Committee met
earlier in the day and he said that he had agreed to be Acting Chair for
the time being, particularly while the scoping exercise was underway.
This exercise was crucial to the future direction of the Patients
Forum. There
would be a full discussion on the outcome of the scoping study and
everyone would have an opportunity to contribute at the May 11th
Patients Forum meeting. After
this whatever decisions the members took would be put in place.
Jonathan would continue as Acting Chair during this journey. 3.
Chair’s
report It
was reported that the only item was the progress of the scoping study.
Since the November meeting the Management Committee had
commissioned a small team to undertake this work. These were Gerda
Loosemore-Reppen, Christine Hogg and Katie Rowan.
This was at its first stage.
A questionnaire had recently been circulated to members seeking
their views. A further
progress report would be given at the March meeting.
The message to everyone was that this was a really important
piece of work and a significant opportunity for members to “tell how you
see it” in terms of what the Patients Forum provided and did not
provide, what was liked and what was disliked, what worked and what
didn’t work. The
more information members could provide, the more confident it would
possible to be in the decisions that members would be helping in
formulating later in the spring. There
would be a number of opportunities over the coming months to feed into
this exercise together with the substantive discussion in May on options
for ways in which the Patients Forum could go in the future and where
the members would like it to go. 4.
Information
Exchange Barbara
Wood (BMA Patients Liaison Group):
It
was reported that not a lot had happened since the last meeting as far
as the PLG, the BMA or the RCR were concerned apart from being swamped
with consultation documents. Apart
from that they were continuing to carry forward two important projects
at the BMA, a consultation paper that had gone out and it was hoped that
people who were interested might have a look at it and see whether they
could contribute; the second
was that they were continuing to push forward on the Who’s Who
project. At their last
meeting they had concentrated on surrounding mental health services.
At the next meeting the theme would be public and patient
involvement. Ruth
Taylor (Haemophilia Society): It
was reported that they were finally settling down after quite a bit of
disruption, the arrival of a new Chief Executive etc.
One of their major projects was seeking to increase awareness of
the problems of women with bleeding disorders.
They were producing a dedicated website on this and this would be
going live in a fortnight. There
was also a website geared to professionals, particularly those involved
with obstetrics and gynaecology, and
also GPs - relating to bleeding disorders that affect both women and
men. Brian
McGinnis (L’Arche Toby
Williamson (Mental Health Foundation): It
was reported that there was nothing to add to the items already
described in the Patients Forum Newsletter.
In relation to consultations, there was an EU Green Paper on
mental health and this was relatively short –
only two questions – and the deadline was 26th May.
One new item was that they were doing work around service user
outcomes in mental health. This
was being done by David Crepaz-Keay.
If any PF organisations had done any work on service user defined
outcomes from any context they would be interested to hear from them in
order to make comparisons with the work they were doing.
Toby announced that it would be his last Patients Forum meeting
(although the MHF would remain a member) because he would be going to
work for the Department of Constitutional Affairs on a secondment to
help them communicate and engage with their stakeholders around
implementation of the Mental Capacity Act.
The code of practice consultation
for the Act would be starting in early March so for those
organisations affected, watch out in early in March for announcements. Annie
Sayer (Mencap):
It was reported that one of the main pieces of work they were
doing was working with families of people with a learning disability who
had died in hospital. They
were currently going through complaints procedures.
They were primarily focussing on the second stage of the
HealthCare Commission procedures.
The first complaint that they had input into had been lodged
about 15 months earlier and only in the last couple of weeks had there
been a report from the HealthCare Commission.
They were disappointed at the nature of the response to this
complaint. If anyone
had any experience of the HealthCare Commission complaints process,
could they please contact Annie. Mark
Hill (MND Association): It
was reported that they were working on a number of issues 1)
the
Assisted Dying Bill, this was being re-introduced by Lord Joffey and
likely to be going to the House of Lords imminently. The main change
here was that this would be assisted physician suicide led rather than
through euthanasia. 2) They
were waiting for the Green Paper on welfare reform.
This was due out in January at some point.
3) On the DOD, they were waiting for this piece of legislation.
One part had already come out with the scrapping of the means
testing for children if they needed adaptations to their home.
There were other sections from the Gerda
Loosemore-Reppen (Sign): It
was reported that Sign was interested in specialist commissioning and
making an input into the Warner Review.
They had commissioned, through another organisation, a review of
specialist commissioning as it affected people with psychiatric
conditions and deafness. The
consultant was going to work a day a week looking at this process in
more depth and would report back, hopefully in time for that review.
It was also reported that the Sign health software that produces
diagnostic questions that GPs or other healthcare professionals might
ask a patient in sign language was being migrated onto a portable device
that could be used on handheld hardware.
It was also being translated into twelve community languages so
it could also be helpful in the absence of an ethnic minority language
interpreter in GP consultations. This would open up consultations to a
wider group of people and, perhaps, increase
equity. Eileen
Neilson (Royal Pharmaceutical Society):
It
was reported that they were doing work to develop a strategy on patient
and public involvement for the Society – not the pharmacy profession.
They were now moving to Stage 2 and would be going to the Council
in February with proposals and updates about how to go about creating a
draft strategy and then going out to broad consultation on that.
It was also reported that they were in the process of initiating
a project on ‘what does good commissioning look like?’ They were
funding this jointly with several other pharmacy organisations.
If interesting material came out of this they would be looking to
publish it towards the middle of the year.
Their major focus at the moment was the Foster Review of Non
Medical Professional Regulations. Andrew
Foster was due to make his recommendations to Ministers before Christmas
so they were waiting anxiously to hear what he would recommend
for RPS and the other regulators. Alison
Pettifer (Developing Patient Partnerships):
It
was reported that their next
campaign would be launched the following day and this would deal with
stress. Hopefully they would
receive press coverage for it. The
next campaign would be on patient and public involvement. Ian
Banks (BMA Patient Liaison Group): It
was reported that they had discussed electronic records and what had
stood out was that confidentiality only became a problem when it
affected oneself. Somebody
else’s confidentiality came low down the list of priorities.
It was also reported, with regard to the Men’s Health Forum,
that they were working with a number of organisations present at
the meeting. There would be
a conference in June 2006 looking at men’s use of health services with
regard to mental health services, which were very badly used by men
generally. There would also
be a manual produced along the lines of the Haynes Manuals (for cars).
It would be called The Brain and it would be about men and mental
well-being. Jonathan
Ellis (Help the Aged): It
was reported that the pieces of work referred to at the previous meeting
were still very much ongoing – NHS Podiatry Services and end of life
care. They would be
publishing a report in the Spring from the focus groups they had been
holding around the country with older people to talk about their fears
and expectations around the end of life.
In terms of their elder abuse campaign also mentioned last time,
they would be launching a public awareness campaign on 30th
January with a Parliamentary reception and various materials that they
would be distributing around the country.
There was a website aimed at securing 25,000 signatories
supporting that campaign to tackle elder abuse:
www.IWill.co.uk
People were invited to visit the site and sign up. Appendix
Key
messages •Current
choice policy could increase inequities if it is not geared towards
disadvantaged •Equitable,
progressive vision of choice could reduce inequities and achieve wider
benefits •Need
to develop choice in primary care and long-term conditions to meet needs
and preferences out of hospital Equitable
choices •Progressive
vision of patient choice Choice
should aim to do more than create a market. The primary goal of choice
should be to improve outcomes and reduce inequalities. Findings: Equity
and choosing Equity,
contestability and voice Equitable
choices in primary care Summary Project
aims •Most
equitable implementation of patient choice •Development
of choice in the future to improve inequity •Contribute
to tackling health inequalities •Not
comparing choice vs planning •Not
‘solving’ health inequalities Healthcare
inequities •Equity
founding principle of NHS but… •Health
care inequity within the NHS •Social
classes IV and V had 10% fewer preventive consultations than social
classes I and II •Hip
replacements were 20% lower among lower SEGs despite roughly 30% higher
need •Intervention
rates of CABG or angiography following heart attack were 30% lower in
lowest SEG than the highest. Causes
of inequity •Distance
and transport •Work
and personal commitments •Voice,
knowledge, skills •Beliefs,
behaviours, abilities •Inverse
information law •Participation
in decision-making Framework
for progressive choice •Build
meaningful choice throughout the system •Information,
targeted support, advocacy and transport •Harnessing
voluntary and community sector to support and to feedback the ‘voice
of choice’ •Develop
choice in primary care, more specialisation, more choice outside
hospital •Choice
throughout long-term condition care pathway, empower to self-manage Key
findings and recommendations 1.
Equity and choosing •Patients
currently inequitably involved in decision-making •Pilots
show equitable choosing is possible… •…but
limited applicability to choose and book •…and
lessons not being rolled out 1.
Equity and choosing Information •Beyond
performance indicators •Health-related
quality of life outcomes •Wider
factors of patient experience •All
providers subject to same information for choice requirements •Accessible
information – languages, abilities, formats 1.
Equity and choosing Information
support and advocacy •Commissioned
from a range of sources •Voluntary
and community organisations •‘Support
prescriptions’ for patients who need targeted support or advocacy •Advice
should be commissioned and regulated to ensure high standards •PCTs
will have to balance priorities to ensure resources available 1.
Equity and choosing Transport •Car-less
and less mobile people currently disadvantaged •Choice
could reduce disadvantage, especially if more choice outside hospital •Provision,
organisation and subsidy of transport should be reviewed 2.
Equity, contestability and voice •Contestability
has been driver for choice •Risks
for equity, especially polarisation •Need
to ensure equitable choosability •Market
management by commissioners and effective regulation according to
principles to maintain choice and prevent sink services 2.
Equity, contestability and voice •Providers
and commissioners to gather intelligence of needs and preferences •Organisations
providing info and support should feedback intelligence on needs,
preferences and experiences •Providers
and commissioners need to engage with community •Collective
voice to complement choice 3.
Equitable choices in primary care •Current
emphasis on choice in secondary care conflicts with shift to primary •Unclear
what the objectives of choice in primary care are •Equity
problems include lack of access, particularly closed practice lists •Opening
hours •Inequitable
service choices 3.
Equitable choices in primary care Choice
of GP •Greater
specialisation by health need or demographic segment •Networks
of commissioning practices collaborating to provide a wider range of
traditionally secondary services •Review
of GP funding according to health needs of registered population 3.
Equitable Voices in Primary Care Information
revolution •Information,
support and advocacy •Voluntary
and community sector •Feeding
back the voice of choice 4.
Choice and LTCs Choice
and long term conditions •Greatest
potential beneficiaries of progressive, empowering choice •Least
beneficiaries of secondary care market choice •Develop
choice throughout pathway - personalisation •Specialist
commissioners and providers in community – year of care budget 4.
Long term conditions continued •Choice
of pathway •Choice
of disease or case manager •Choice
to enable self management •Self-management
+ direct access + choice •Communities
of patients for mutual support and collective choice Key
messages •Current
choice policy could increase inequities if it is not geared towards
disadvantaged •Equitable,
progressive vision of choice could reduce inequities and achieve wider
benefits •Need
to develop choice in primary care and long-term conditions to meet needs
and preferences out of hospital
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| Last updated 18/3/2006 | © The Patients Forum 2006 |