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MINUTES
OF THE PATIENTS FORUM MEETING HELD ON JANUARY 15TH 2004 AT
DIABETES UK Present: Jonathan
Ellis – Chair (Help the Aged);
Jean Robinson (AIMS); Sarah Ransome (Blood Diabetes
UK); Alison Pettifer (Doctor Patient Partnership); Sally Brearley (HealthLink);
Susan Haydon (The Migraine Trust); Philippa Yeeles (Involve); Nikki
Joule (Neurological Alliance); Samantha Sharp (Alzheimer’s Society);
Jackie Glatter (Consumers’ Association); In attendance: Diana
Basterfield (Patients Forum) Visitors and speakers:
Stephen Fishwick (National Pharmaceutical Association);
Melanie Smaus (Pharmaceutical Services Negotiating Committee);
Tim Donohoe (National Programme for IT); Georgina Craig (National
Pharmaceutical Association); Alastair Buxton (Pharmaceutical Services
Negotiating Committee); St. John Deakin (Bassetlaw PCT); Susan Grieve
(DH Principal Pharmacists); Beth Taylor (Southwark PCT / Modernisation
Board) Apologies:
Eileen Neilson (Royal Pharmaceutical Society); Gerda Loosemore-Reppen
(Sign); Mike Took (Rethink); Paula Lloyd –Codner (Birmingham TPCT);
Vivienne Nathanson (BMA); Carole Myer – Royal College of Paediatrics
and Child Health); Brian McGinnis (L’Arche); Elizabeth Manero (Health
Link); Angeline Burke (Nursing and Midwifery Council); Hew Helps
(Chiropractic Patients Association); Ruth Taylor (Haemophilia Society);
Marlene Winfield (NHS Information Authority); Sheila Dane (LMCA); Philip
Hurst (Age Concern); Clara Mackay (Breast Cancer Care); Alison Railton (MND
Association)
Speakers:
Stephen Fishwick, National Pharmaceutical Association:
Shaping community pharmacy services Susan
Grieve, Department of Health: Patient
consent, patient confidentiality Melanie
Smaus, Pharmaceutical Services Negotiating Committee: the new
pharmacy contract Tim
Donohoe, National Programme for IT: Feedback from the consultation (see appendix) Minutes The Minutes of the
meeting held on 12th November 2003 were agreed. Matters arising
There were no matters
arising. Chair’s report
It was reported that
the Chair had recently met with Sharon Grant at CPPIH, at their request,
to touch base, as it had been some time since there had been face to
face contact. The meeting
was extremely positive and constructive.
They had talked about some of the concerns in the public arena
around the developing system for public engagement and the PPI
forums and some of the issues around the way the Commission had,
perhaps, appeared to be a little insular at times and not engaged with
the voluntary sector and the patient community. They then began to talk
through some of the ways in which the two organisations – both the
Patients Forum and the Commission – could work alongside one another,
given that at the end of the day their objectives were certainly
complementary. They both
wanted to see better public engagement at all levels of decision-making
and influence in health and care services. They unpicked some of
the early issues that the Commission was looking for assistance on. One
was the ambition for the Commission to operate effectively at a national
level both as an advocate for patients (with a small a) and being able
to highlight issues at a national level.
Sharon had talked about the difficulty they would have, certainly
in the short term until the PPI forums were up and running and feeding
information back to the Commission, to know what usefully they could
examine in those early few months. They talked about the possibility of
testing out and hearing from members of the Patients Forum who obviously
represented such a good, diverse group of patients and consumer
interests, to give them some pointers to help them along their way. They
also talked about the need to investigate what future formal
relationship, if any, there should be between the Commission and the
Patients Forum and how they might work through some of those issues. Jonathan’s reading of
the meeting was that it was very constructive.
He said that Sharon was acutely aware of some of the issues of
concern and some of the criticisms there had been of the way in which
the Commission and the new systems had been coming into play.
She has been very keen to resolve them as soon as possible to
make sure they did not become longer-term problems.
He hoped that this was going to be the beginning of a much more
constructive dialogue in the future.
He would continue to keep Patients Forum members informed of
developments. Patient Choice
It was reported that
members of the Patients Forum Management Committee had been having
discussions with the Department about how the members of the Patients
Forum could contribute to the work that was developing, particularly
around the longer-term vision for choice in health services.
Following that, there was a meeting with Bob Ricketts, Head of
Capacity and Choice, out of which came some discussion around the issue
of information needs – what sort of information and what sort of
access to information would people need to be able to exercise this new
choice that had been promised.
The Chair reported that he was due to have a meeting the
following week with one of the organisations working with the Department
to explore some of those issues.
In a nutshell, they were considering how to engage with a wider
constituency of patient and patient organisations to begin to develop
some of the thinking around information needs and support patients would
need. Working with commercial organisations
It was reported that a
document produced by the Management Committee on working with commercial
organisations had been circulated via email.
One of the issues that continued to be a challenge for the
Patients Forum was securing a long-term future.
As part of that discussion it was clear that the Patients Forum
would need to be much more pro-active in seeking out other sources of
funding instead of relying wholly on the Department of Health in the
future. To achieve that the Management Committee felt it was important
that Patients Forum was absolutely clear about the nature of those
relationships, particularly with commercial organisations.
This statement was what had been agreed as the best way to set
out the Patients Forum stall in terms of the way in which to seek to
make connections with potential funders, the nature of those
relationships and also how decisions would be made. The key thing in the process was that the
membership of the Patients Forum would have an opportunity to comment on
any proposed partnerships in the future. The document was for
members’ information and the Management Committee would work towards
this and using it over the next few months.
People were asked to send in any comments they might have and
these would be kept in mind as the document was kept under review. Information Exchange Jackie Glatter (Consumers’ Association): It was reported that CA was involved in the Dentistry Charges Working Group that the DH were running. There was a consultation going on in Scotland on dental charges. The details of that could be found on the Scottish Executive website. They were also involved with some of the complaints work going on and feeding into the work going on with regard to the regulations. They were also attending a Shipman enquiry seminar on 27th February and had been asked to give evidence to the Public Administration Select Committee where they were doing a one-off complaint session on 29th February that Sir Liam Donaldson and Ian Kennedy were also giving evidence to. It was also reported that there was a consultation on the independent stage of the complaints procedure that CHAI were undertaking. By 26th
January they would also have commented on the GP contract.
With regard to drug promotion, an on-going area of work for CA,
guidelines were out and had been consulted from PAGB (the Proprietary
Association of Great Britain) on over-the-counter advertising. CA
had responded and if anyone wanted to see this and required further
information they should contact CA.
The background to the consultation was that there were
restrictions on over-the-counter advertising for certain disease areas
and those restrictions were being lifted and the guidelines were related
to this. Samantha Sharp (Alzheimers’
Society): It was
reported that a new piece of work they would be starting soon was
looking at genetics and insurance.
There was currently a moratorium preventing insurance companies
asking for information about any genetic tests that the applicant might
have had. The moratorium
would run out in 2006.
They had held a meeting with Breakthrough Breast Cancer and
Cancer Backup the previous day to discuss what should replace the
moratorium and the work required to influence what happened after the
moratorium. People
interested in working with Alzheimer’s Society on this should get in
touch. Nikke Joule (current
doing some work for the Neurological Alliance):
It was reported that they were
still almost entirely working on the NSF for Long-Term
Conditions that focused almost entirely on neurological conditions.
This was coming up to a crucial phase.
The draft framework was due to go to the Ministers in April and
was looking on course to do that.
They were also having a shake-up of staff and had held interviews
that week for two posts, the NSF Project Officer post and the Chief
Executive. Philippa Yeeles (Involve): It was reported that they would be holding a national conference on 10/11th November and their call for proposals was going out by mid-January and would available on their website. It was also reported
that a revised edition of their briefing notes for researchers would be
out in February. Susan Haydon
(Migraine Trust): It was reported that they were currently involved in a
large piece of work looking at all their patient information with
special reference to patient choice and they were trying to follow the
guidance of the Centre for Health Information Quality. Sally Brearley
(Health Link): It was reported that a copy of the magazine
“Patient and Public Involvement” had been seen in the Forum Support
Organisation of Sally’s local Patient and Public Forum.
It was a commercial publication produced by Bearhunt.
It was a thin magazine for patient and public involvement
professionals. The
publication would come out 10 times a year and cost £295.
If an email were sent to Bearhunt they would send one copy free.
It was also reported that Health Link would very much like to
hear from people involved in a local Patient and Public Involvement
Forum or from people who may have been approached by the Commission to
monitor and evaluate the set up of a Forum. Karen Thomson
(Diabetes UK: It was reported that they were working on the GP
contract and the quality framework to make sure that this was
followed through in terms of how diabetes services were actually
delivered. They were also
looking at PCTs and the three year plans.
There were a couple of national priorities in the Priorities and
Planning Framework in relation to diabetes so they were looking to get
more local targets put in for years 2 and 3.
Karen said she had volunteered to join the PPIF for Homerton
Hospital, her local one, and this should be interesting as it was one of
the hospitals going for foundation status.
This had not met yet. Carol
Herrity (Royal Mencap Society):
It was reported that Learning Disability Week 2004 would be
21 - 27th June and the campaign theme was health.
They were aiming for three main points: equal access to
healthcare for people with learning disability; better training for
healthcare staff and encouragement of healthy lifestyles. Katy McCoy (Speakability): It was reported that they were working on a medical passport
put together by a working group working with aphasia. With consultations with GPs and Doctors being so short,
people with aphasia found it difficult to get words out so it would be
very useful for them to have something they could point to.
They had worked on this with about seventy different
organisations and were getting feedback from nurses and GPs and people
with aphasia. It
would probably move towards being for all communication difficulties to
make sure people with aphasia received a good hearing from medical staff. Sarah Ransome (Blood
Pressure Association): It
was reported that most of their work at the beginning of the year was
around the GP contract and the NICE guidelines for hypertension that
were coming up shortly. There were also new British Hypertension Society
guidelines for the management of hypertension and these were all coming
out at the same time. The
Association provided information to people with high blood pressure to
make sure they were well informed as well as ensuring that GPs and other
medical staff had their needs for information on hypertension met.
They were also beginning to get involved in policy work around
the amount of salt in foods and they had been involved in stakeholders
meetings with industry and the Department of Health around salt and
blood pressure. They were
also dipping their toes in the water in terms of obesity and the
promotion of foods to children. Jean Robinson
(Honorary Research Officer, AIMS) :
It was reported that their helpline remained extremely busy
coping with the serious problems and queries from pregnant women and
women who had had babies. The
most serious of these was the number of women suffering from post
traumatic stress disorder after child birth.
These women were suicidal and high risk and a study had shown
that British maternity care was creating ten thousand cases per annum of
ptsd and it was not surprising that suicide was the largest cause of
maternal death. In
the meantime women were having to fight very hard to get anything like a
normal birth which had a lower risk of mental illness afterwards.
They were currently very worried at how people were going
overboard on how child protection was impacting on maternity care and
pregnant women. Anyone
with postnatal depression or ante-natal depression was being considered
a risk and referred to Social Services and no one had done any work on
the cost benefits of social work intervention in child protection.
AIMS had not yet seen a case where social work intervention was
not seriously and long-term damaging to the entire family and their
trust in medical care, the education service, paediatrics etc.
A large number of women called AIMS and said they were
self-medicating with St. John’s Wort for post natal depression because
they were so terrified of having it on their case notes and having their
children taken away. It
was also reported, in relation to the Data Protection Act, that mothers
frequently need to look at their records to ensure that what is being
said about them does accord with the facts yet many could not afford to
pay to access their records. In addition Social Services and Health Services
were deliberately failing to comply with DPA, they were refusing, lying,
destroying records – anything which could provide evidence of critical
care was going. Strong penalties were required for failure to comply
with the DPA. Alison Pettifer
(Doctor Patient Partnership – now known as Developing Patient
Partnership): It was reported that their first campaign of 2004 was
on “minor ailments self-care at home and at work.”
Future work included the “men and pharmacy” campaign in April
aimed at encouraging men to use pharmacies and the GMS new GP contract
as they consider this is a big issue around the new out of hours
provision. They would be
doing a campaign to inform the public about what the contract would mean
to them and also the appropriate use of emergency services. APPENDIX Stephen
Fishwick, National Pharmaceutical Association:
Shaping community pharmacy services - the new pharmacy
contract “We are going to
present on TAPPING COMMUNITY PHARMACY’S POTENTIAL with
reference to a recent Department of Health statement that pharmacy is
“probably the biggest untapped resource to health improvements.”
We are here with a number of colleagues and you may ask why we
are here in such numbers. It is probably because pharmacy stands at the
dawn of a new era. I don’t think it is too dramatic to say that and it
is important that pharmacists don’t skip excitedly into that new era
or even tread cautiously into that new dawn without making sure that
patients are alongside them.
After all, it is very bad for business that services that
pharmacists aspire to provide are not the same services that people
actually want. It’s not
just about a commercial imperative; as an integral part of the NHS
family and as recipients of public funding, pharmacists have a duty to
dialogue with patients and users and I’d go further and say that
patients have the right to help shape the future of pharmacy services
and today is an opportunity to do that y having your say about the new pharmacy contract as all the negotiating
partners to the new contract are all represented at this meeting. Since September Melanie Smaus and I have been
talking one-to-one with patient groups – about a dozen – in that
time, canvassing views on what patients think about community pharmacy
services now and what services they might like to see provided in the
future. In early
December we sent out, via the Patients Forum, a questionnaire to you all
and thanks to those who responded.
Today we want to feed back what we learnt from you and also to
spark some further comments for the discussion later. Some background.
Pharmacists are among the most accessible healthcare
professionals. There are approximately 12,000 community pharmacies in the UK
and almost 50% of the population live within 500 metres of a pharmacy.
This puts them within reach of people who need to use them most,
this is often the elderly and parents with young children. About six
million people visit community pharmacies every day and a consumer
survey showed that pharmacists are trusted healthcare professionals and
there is support for an extended range of pharmacy services – notably
repeat dispensing and medicines management type services. Pharmacies
already provide a wide range of services, smoking cessation services,
medicines management services, care home services, dispensing NHS
prescriptions, of course, giving advice about the treatment of minor
ailments to name but a few.
The range of services does very greatly from pharmacy to pharmacy
and from PCT to PCT depending on whether additional money has been
allocated locally. Almost all PCTs do commission at least one
pharmacy service additional to the NHS contract. Nevertheless there is a
lot of untapped potential capacity due to a combination of funding
constraints, lack of pharmacy representation at high level in local NHS
decision-making bodies, possibly underpinned as well by an historically
narrow view of what pharmacists are capable of (perhaps a view shared by
some pharmacists). There are other limiting factors relating to IT,
access to patient data and premises and, of course, the current national
contract which rewards following up prescriptions as opposed to the
range and quality of services. Fortunately it seems that pharmacy is an idea whose time has come and
certainly as there is growing recognition of the importance of self-care
and self-management; this matches community pharmacies’ mission
statement – ‘to help people to live independently and healthily in
the community’. The
Government’s recent Vision for Pharmacy in the new NHS document
foresees future pharmacies as “places where patients are able to
access an increasing range of healthcare services, a resource for
improving health, especially for vulnerable and deprived populations.”
“Pharmacies should play a key role in delivering on National
Service Frameworks and should have a coherent public health role and be
in integral part of the NHS family. “
These high hopes for pharmacy were repeated in “Building on the Best” which spoke in very positive terms about pharmacy based chronic disease monitoring, repeat dispensing, minor ailments schemes, medicines management etc and we are very pleased that so many positive statements about pharmacy were made in a consultation that was patient led. It seems as if
there is a degree of high level political will to make more of pharmacy
buttressed by favourable public opinion.
What is needed now is a package of incentives and support to help
pharmacists turn those fine words into action.” Proposed
new pharmacy contract - Melanie Smaus, Public Affairs Officer, PSNC, the
body that represents community pharmacists and NHS services in England
and Wales.
“The current contract
is based on decisions made in 1987 and the reason that the reform of the
contract is needed is because it is based on quantity rather than
quality. The hallmark of a
successful community pharmacy at present is characterised by the number
of prescriptions dispensed so the higher the number of prescriptions
dispensed the more successful it is deemed to be. The new contract aims
to extend the services provided to patients and will be implemented and
introduced from April 2004. The
aim of the new contract is to provide clear minimum standards for
community pharmacy, clear and fair rewards
for high quality service, and to really tap into the skills of community
pharmacists and their staff.
Community pharmacists have 4 – 5 year Degrees on the use of
medicines and their effects and the aim of the contract is to make
better use of these skills for the benefit of patients. Other aims are
to deliver better primary care community services and to integrate
community pharmacy as an integral part of primary care and to minimise
bureaucracy. This
new contract would be an evolving contract and there would be a gradual
transition to implementing it. The
contract is divided into three different services: essential,
advanced and supplementary. Essential
services would be
provided by all community pharmacies from the outset and would be
specified and agreed nationally.
Proposed services include the traditional role of community
pharmacies, the dispensing role, supplying medicines and giving advice.
A further service is repeat dispensing.
This will mean that patients will be able to go to their
pharmacist for repeat prescriptions for up to a year without having to
see their GP first. This relates to the “Building for the Best” consultation
and expanding choice for patients.
Currently there are thirty areas where patients can get repeat
prescriptions and these will be extended to a national level. Other
services include signposting patients to other healthcare providers.
Six million people visit a pharmacy every day so community
pharmacists have a great potential to be a source of information and
advice, about local self-help groups and information about other
healthcare professionals. The new contract aims to encompass this.
Another
role is public health information.
Pharmacists will be able to give information on a healthy
lifestyle and this really supports the Government’s aim regarding
preventative health care. Pharmacists
will be able to give information on diet and nutrition, opportunistic
one to one counselling, coronary heart disease factors, smoking
cessation, the promotion of flu vaccination and also information on the
use of antibiotics. This
also supports the work the DPP is doing on self care in partnership with
government since the aim is to empower patients to gather information
and have a stake in their own healthcare treatment. This is also supported by the recent move from
prescription-only medicines to over–the-counter medicines.
This will give people more control and responsibility for
managing their own healthcare and will also tackle existing health
inequalities because patients who are eligible for free prescriptions
will still be able to obtain these medicines free of charge from the NHS. Other
services include clinical governance so that pharmacists are required to
report adverse incidents to the National
Patient Safety Agency for example, medication waste disposal and sharps
disposal. The
second level of services for the contract is advanced services.
This will require accreditation and training for pharmacists and
there will be a gradual transition to providing these services.
One of the services proposed is the Medicines Use Review where a
patient will be able to meet with a pharmacist on a one-to-one basis to
discuss their medication. This
seeks to give patients more knowledge about their medication, why they
are taking it, and improve medicines concordance and reduce medicines
wastage. This is important
for older patients in particular because 80% of over 75 year olds take
at least one prescribed medication and 36% take four or more.
This service is talked about in the Older Person’s NSF as a
target. Related
to the Medicines Use Review is the Prescription Intervention Service
where pharmacists will meet with a patient on a one-to-one basis and be
able to make interventions in partnership with the GP and the patient.
For example, if a patient is taking two 20 mg tablets, it might
be easier for the patient to take one 40mg tablet.
This is an example of dose optimisation.
Another
service proposed at that level is the First Aid Service, which seeks to
formalise the provision of emergency first aid for minor injuries. The third level of service is Supplementary Services.
This is part of the new contract and these will be agreed
nationally but it will be up to local PCTs to decide which services to
commission according to local patient need.
These will be introduced over time and PCTs will be able to add
new ones according to local need. These include: Minor
ailments management Diabetes
screening Substance
misuse services Coronary
Heart Disease screening/Healthy Living Service Disease
specific medicines management services Palliative
care services Emergency
Hormonal Contraception service Full
clinical medication review Concordance
services Out
of Hours service Care
home and Intermediate Care services Home
care services –domiciliary assessment Head
Lice management service Smoking
cessation service Gluten
Free food supply service Needle
exchange scheme Services
to schools
It is envisaged that
the contract framework will develop over time, to keep pace with the
changing needs of patients and the NHS. This gradual contract
development may, for example, see some supplementary services becoming
part of the essential category.” Feedback from the
consultation - Tim Donohue “There were ten
responses to the consultation circulated by the Patients Forum.
This is not enough for a scientifically robust analysis but
together with the one-to-one meetings a number of themes emerged.
One is that a number of pharmacy services are popular or would be
popular if they were widely available – repeat dispensing and
medicines use review. The
support for expanding the services more generally included home care
services, screening for chronic diseases and utilising community
pharmacies as a link between health and social care. You told us that there
is a need to get the public’s understanding and trust of what
pharmacists are capable of. It
is acknowledged that pharmacists are medicines experts but you make the
distinction that some people still do not see them as health experts.
How would those people feel about going to a community pharmacy
for the kind of support they are used to getting from a GP or a nurse or
even from secondary care? Related
to that is your persistent and insistent request that pharmacists and
their staff must undergo accredited and ongoing training.
It was also pointed out to us that there might be a inherent
tension between pharmacists current ready accessibility and their taking
on a more cognitive role that will involve more time in one-to-one with
patients and how will pharmacists ration their time and what impact will
this have on their unique selling point in being a highly trained health
professional available throughout the day without an appointment?
There was also concern about access to electronic patient
records. The general
opinion was that they should have access to these records with patient
consent and this is supported in the “Vision for Pharmacy” that
states that “ensuring patient consent is obtained and confidentiality
is maintained during data access and transfer needs to be addressed.” Some of you stated that
pharmacy pharmacists should have access to nhsnet to be able to identify
the range of medication that a patient is taking and, in particular,
those of you representing older patients, said that older patients would
presume that pharmacists could access electronic patient records and,
for that reason, would possibly omit to tell a pharmacist certain
information about their medication or past history because they would
not want to be repetitive. We have pulled out a
selection of quotes from the questionnaires: “Community pharmacists are a very under-utilised resource and could be
a very helpful source of information and support” “People with long term conditions would benefit enormously if community
pharmacy were used to its potential for patient education and supporting
self-management.” “There need to be strict protocols if certain services envisaged are to
be successfully implemented, e.g. early ID of people with raised blood
glucose levels.” “How will people know what services are available in different
pharmacies and how can they be confident of the accreditation status of
individual pharmacists?” “There needs to be more promotion of the role of pharmacists in order to achieve all that is proposed…it will involve changing people’s ideas on what a pharmacist does.” We have had a range of views from you all very positive but you do insist that in the drive to increase choice, capacity and access, of which expanding community pharmacies is one aspect, that quality and continuity of care and patient safety shouldn’t be compromised. _______________________________________________
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| Last updated 8/10/2004 | © The Patients Forum 2004 |