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Minutes
of the Patients Forum meeting held on 15th March 2006 at
Which? Apologies:
Judith
Wardle (Continence Foundation); Angeline Burke (NMC); Hew Helps
(Chiropractic Patients Association); Graham Box (NAPP); Peter Walsh (AvMA) The
minutes of the last Management Committee meeting held on March 15th
were noted. Information
Exchange Mark Hill (Motor Neurone Disease Association): It was reported that they were currently mainly working on the Assisted Dying Bill due back from the Lords early in May. This would be the amended report based on the Select Committee review. Lord Joffe introduced the Private Members’ Bill and it was now very much focused on physician-assisted death, which is where the doctor would prescribe drugs for an individual rather than on euthanasia. It was also reported that since the last meeting there had been a Green Paper introduced on welfare reform, The focus was to encourage people on benefits to get back to work – to ‘allow’ them an opportunity to get back to work rather than ‘telling’ people to get back to work. One of the problems with this was that the Press seemed to pick up on particular scare stories about welfare scroungers. One particular incident was someone who was claiming they could walk no more than 40 metres when it was discovered that he was running marathons. It was trying to get over stories like that. Liz
Ranger (Contact a Family): It
was reported that of relevance to the Forum was their Parents and
Paediatric Project that was entering its second year.
The first phase had been very much about getting paediatricians
to start referring families on to Contact a Family – a one stop shop
for further and very specialist information.
The second phase was focusing on parent participation in health
settings. This tied in with
Liz’s personal role which was about parent participation across all
services. They
were further developing the resources they have on their website as one
aspect of that work and continuing to work with parents’ groups
throughout England, very much developing parents awareness of the
opportunities for them to become involved in shaping services. Mencap:
It
was reported that for some years there had been a campaign called
“Changing Places” which was about having accessible adult changing
places to supplement the wide range of changing places available for
small people. There
will be a major launch of that project in Tate Modern in July, probably
because Tate Modern is one of the very few places outside the Dome where
they actually have accessible changing places for adults.
Eileen
Neilsen (Royal Pharmaceutical Society):
It
was reported that they had had a very successful presentation from Roz
Levinson to their Council in February on the Patient Involvement
Strategy. The Council had very
enthusiastically supported the work done so far as well as the next
stage – developing a draft strategy. This would go out for very wide
consultation in the summer.
It was also reported that Eileen sat on the Regulators PPI Group
which was about sharing good practice in PPI between the Regulators.
She had been asked to lead a small piece of work about setting up
a small series of informal seminars on particular topics in PPI.
The plan was that patients groups would be invited and she would
be coming to the Patients Forum for volunteers or nominations for maybe
a couple of representatives to go to each of those seminars.
In relation to the Joffe Bill, on of the items Eileen had been
working on recently was to start a piece of policy development work
about what a change in the law on assisted suicide would mean for
pharmacists. This
was the most difficult topic she had been required to pick up since she
had started in policy work. She
would be going to Council with an initial set of proposals in April
about what that policy work would need to cover.
Clearly it would need to include engagement with all the relevant
stakeholders from a very early stage; she would hope to be returning to
the Patients Forum to develop informal contact with interested groups
and talk about how they could engage them. Geraldine
Amos (Home from Hospital Care):
Geraldine
wished to raise something that had been going on for a long time:
when funds came from a local authority the decision about future
funding always seemed to be made at the very last minute.
This left staff in a very insecure position.
Was there any way that pressure could be brought to bear to
prevent such late decision-making? Sally
Sweeney Carroll (Royal College of Paediatrics and Child Health):
It was reported that they had now appointed the Children’s’
Participation Project Manager, Sophie Auckland,
and the Patients and Carers Advisory Group were very much looking
forward to working with her as she was full of ideas.
One of the major concerns of her group was the great concern
about child protection issues and doctors and in particular the massive
increase in the number of complaints against paediatricians.
The College was doing some work to get their heads around what it
was all about. It was
also reported that the College was also taking a great deal of interest
in the new proposed Food Bill around obesity and children.
The College was also setting up a working group looking at
smoking. With the changes in the smoking law, the experience in Gerda
Loosemore-Reppen (Sign): It
was reported that mention had been made at previous meetings that Sign
had developed translation software for GP consultations – this
produced diagnostic questions in sign language.
It has also been translated into twelve community languages with
either voice input or written input with regard to the same questions.
The Department of Health had very generously decided to fund Sign
to distribute the software on a trial basis to PCTs.
That had happened earlier in the year.
Sign was monitoring whether this software was actually going to
be used or not. They
found that half of the PCTs that received the trial license had not even
opened the email that suggested this help was available. The
others had taken it up and were trying it.
The aim was that it would then be licensed and paid for by the
PCT out of special funding by the Department as part of the
implementation of the document called “Equity in Access” – which
was meant to improve access to services for deaf people with mental
health problems. There
was a recurring budget for this which went through PCTs.
There were also some centrally funded projects among which would
be a website which would show how the money had been allocated and what
had happened to the proposals and recommendations.
It was also reported that Sign had set up a website called www.deaf-friendly.org.uk,
which showed exactly how much money had been sent to PCTs as part of
this implementation project and what had happened to it.
There are staff in place to monitor whether deaf awareness
training had been commissioned and whether the software had been
installed or not. It also
signposted people on to a trial website for the software so people could
try it out. Finally,
it was reported that Sign was working on a model disability equality
policy that would have a deaf component because it was not by any means
clear that disability equality policies would be specific about the
needs of deaf people.
The idea was to devise a template that might be promoted more
widely. Gerda
also reported - wearing
another hat – that she was representing the Patients Forum on a
working party at the Royal College of Pharmacists to do with reviewing
the code of ethics for pharmacists.
This review would take quite a long time to be completed.
She would be reporting back on this at a later date as there
would be a consultation for stakeholders and the Forum should have a
role in that. Frances
Blunden (Which?): It
was reported that the key new area they were developing work around at
the moment was out of hours services.
They were doing a project jointly with the BMA. At the moment
they were writing up the consumer research they had done and the BMA
were doing similar focus groups in the same areas both relating to
accident and emergency doctors and GPs. This would be a great
achievement when the report eventually came out in terms of cooperation.
It was also reported that dentistry continued to be a key area of work.
Recently they had done some more market research about lack of
confidence among the public in the reform packages that would come into
effect from 1st April 2006.
There were some real questions around charges.
Although Frances and Jonathan had both been on the working group
the level of charges were now slightly different from the ones they had
talked about then and this might have changed their view of the way of
the world. There
was a huge amount of misinformation out there at the moment which it was
important to counter.
It was also reported that Which? were continuing to work on
medicines relating to issues of quality for consumers; also working on
cosmetic and laser eye surgery, issues around safety and so on;
choice and system reform continued to be another key issue.
The Food Team were continuing to do a lot of work around
nutrition and in their report they had highlighted the somewhat dubious
practices going on around food being advertised to children.
This had captured quite a lot of people’s imagination.
Ian
Banks (BMA Patients Liaison Group):
It
was reported that this was a very interesting time for
the PLG because they were reaching that point where the PLG was really being recognised by the BMA as a force within
the BMA itself. With that
recognition came an element of fear that the BMA had a bit of a tiger by
the tail, was it going to go the right way?
The beauty of it was that the PLG had been given a free rein and
it was felt that input from the Patients Forum into the PLG on issues
such as the use of A & E
could be very valuable. There
were many issues, particularly patient confidentiality, because of its
close relationship with the doctors working there, so it tended
to be very high on the agenda. The
implementation of the White Paper was also very important. They were
very concerned about the representation of ethnic groups on the PLG and
keen to see that this was properly addressed.
Jonathan
Ellis (|Help the Aged):
It
was reported that a lot of work had been done, particularly
in recent months about NHS funded continuing care.
There had been a Panorama documentary at the beginning of March
which had looked at this issue. They
had been working on this with a small group of organisations including
Age Concern, the Alzheimer’s Society and the Royal College of Nursing
for quite some time, working with the Department of Health and helping
them to develop the new National Framework for Continuing Care.
The central issue seemed to continue to be the boundary and the
lack of certainty about the lack of boundary between where NHS funded
universal health care stopped and means tested social care started.
There were a number of people falling through the gaps and paying
for what should be universally free NHS funded continuing care.
The organisations had just produced a guide for the public on NHS
funded continuing care
and this updated people on the current case law.
There had been a very recent case which had further clarified the
situation. The guide
gave people suggestions on what they could do if they felt they should
not be paying for their long-term care – whether they were receiving
it in a care home or in their own home.
This would continue to be a big issue ahead of the consultation
on the National Framework for Continuing Care – this was supposed to
start in April. This
was getting to the crux of the boundary between health and means tested
social care.
Appendix Janice
Shersby, Department of Health ‘Our Health, Our Care, Our Say Programme
Team
Most contact with services occurs in the community •86%
of patient contact occurs in the community – outside of hospitals •Everyday
there are thousands of contacts with community health and social care: –890,000:
Consultations with a GP or practice nurse –315,000:
Non GP Community contacts –18,000:
NHS Direct calls –4,000:
Walk in centre events –26,000
NHS sight tests –482,000:
social care contact hours •1.7m
adults receiving social care Inputs
to White Paper development The
demographic challenge •lifestyles
are adding to risks –rise
in obesity & associated problems –binge
drinking –rise
in LTCs •baby
boomers are getting older –elderly
have more LTCs & use more services –more
older people living alone, away from family and friends •insufficient
focus on prevention & education •access
is unfair & inconvenient •quality
is uneven •care
often in expensive remote settings •services
don’t work together for user The
public’s priorities •more
choice and control over their health and care •promote
prevention & independence •greater
convenience & easy access •focus
on all their needs •Focus
on those in greatest need/ greatest risk The
people’s choices •better
prevention & earlier intervention for improved health and well-being
•more
choice, control & a stronger voice •improve
access to community services •better
support for people with longer term needs Better
prevention & earlier intervention •NHS
life check targeted @ key life stages •health
and social care working together •strengthen
roles of DASS and DPH •better
information, more self care •confront
mental illness & isolation •a
fitter More
choice & a stronger voice •extend
those entitled to direct payments •pilot
individual budgets •choice
of GP made a reality •accessible
information •clear
links from voice to action Tackle
inequalities •strengthen
local commissioning, health and social care alignment •ensure
that funding is fair, targeting need •new
providers in areas of poor provision •role
of community & voluntary sector Improve
access to community services •extended
use of pharmacies •easier
to access GP •shifting
care - community hospitals •co-location
of services •urgent
care strategy reducing admissions •establish
end of life care networks •access
to community health services Support
for people with long term needs •health
and social care jointly responsible •invest
in more self care – expand EPP •develop
common assessment framework •care
plans •helpline,
respite care & training for carers •assistive
technology •multi-disciplinary
teams How
are we going to make this change? •Inclusive
approach •strengthened
voice arrangements •Pilot
and develop models •system
reforms •shifting
resources into community and prevention •workforce
development •better
joining up of services at a local level, new outcomes framework •encouraging
innovation & social enterprise •allowing
different providers to compete and successful practices to expand
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| Last updated 18/4/2006 | © The Patients Forum 2006 |