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					            UNITE annual report 2004/05:
                      past and future plans




                                                                                  April 2005




Copies of this report are available by post from the Communications Manager, Hillingdon
PCT, Kirk House, 97-109 High Street, West Drayton UB7 7HJ.
This report is also available on the trust website (www.hillingdon.nhs.uk under
“publications” and “have your say”) or can be emailed (requests to
margie.lindsay@hillingdon.nhs.uk).
This report is available on request as an audiocassette or CD and in large print. If you need
help in understanding this report, please contact the PCT.
Copies of this report have been given to the North West London Strategic Health Authority,
the PCT board members and management team for comment and information.


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UNITE annual report 2004/05: past and future plans

Contents
Introduction ........................................................................................................................... 3
What we promised to do ....................................................................................................... 3
    Improve information .......................................................................................................... 3
       Patient groups ............................................................................................................... 3
       Local people .................................................................................................................. 3
       Providing information to hard to reach groups ............................................................... 4
       Improving access to information .................................................................................... 5
       Other communication and access developments .......................................................... 5
           Website ..................................................................................................................... 5
           Multi-media ................................................................................................................ 5
           HAVS (Hillingdon Association of Voluntary Services) ................................................ 6
       Conclusion .................................................................................................................... 6
    Expert Patients Programme ............................................... Error! Bookmark not defined.
       Appoint an Expert Patients Programme co-ordinator ..................................................... 7
    Make sure users are involved in care plans and monitor the plan .... Error! Bookmark not
    defined.
    Strengthen public panels and help them link to other patient participation groups ............. 7
       Hayes and Harlington .................................................................................................... 7
       Uxbridge and West Drayton .......................................................................................... 7
       North Hillingdon ............................................................................................................. 7
    PALS (Patient Advice and Liaison Service) ....................................................................... 7
    Develop different ways to involve the public and users...................................................... 8
    Copy letters to patients about their care and treatment ..................................................... 9
    Help the Patient and Public Involvement Forum develop ................................................... 9
    Annual survey ................................................................................................................. 10
    Measure how much users, carers and the public are involved in primary care trust work 10
    Appoint a patient, carer and public involvement co-ordinator........................................... 11
Future plans ........................................................................................................................ 11




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UNITE annual report 2004/05: past and future plans

Introduction
In 2003 UNITE was formed as a group to develop plans for involving the public, users and
carers in the health service. The group helps the PCT meet its duties of care under section 11
of the Health and Social Care Act 2001.
In its first year, UNITE consulted widely within the health and social care economy of
Hillingdon. This formed the basis of UNITE’s overall strategy and a work plan for a 12
month period. This annual report looks back at what UNITE has achieved in its first year and
what its plans are for the coming 12 months.

What we promised to do
Improve information
In our first report UNITE said it wanted to improve information to patients and local people.
The idea was to create information materials for patient groups and local people. Hard to
reach groups continue to be a section of the public for which access to health information and
services needs to be improved.

Patient groups
Over the year the PCT has published its own information —leaflets, posters, postcards,
bookmarks and other materials. Information from other sources, in particular the Department
of Health, has also been available. Specific groups targeted with information included expert
patients, diabetes, stop smoking, carers, speech and language therapy for children and adults,
older people, podiatry, independent living and others. These materials were distributed in a
variety of ways:
   Distribution through GP surgeries, PCT clinics and other buildings, opticians, dentists,
    pharmacists, libraries, schools, voluntary organisations
   Available at events such as Carers Week, Day of Older People, private functions
    organised by Sunshine Magazine and numerous others
   PCT fun day
   Special events at the Chimes and Pavilions shopping centres (for example, promoting
    stop smoking, continence)

Local people
Examples of initiatives with local people included:
Neighbourhood Networking in Hayes where health visitors from Hayes met with local
people, distributed information about health services, offered some health checks (blood
pressure, blood sugar readings, weight management) and encouraged local people to help
plan and design services for the area (through a series of “walls” that represented subjects
such as events, dreams and local initiatives).
Vox pop (a face-to-face quick survey; limited number of questions around a specific topic)
which literally means voice of the people — was used a few times to gain an insight into

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UNITE annual report 2004/05: past and future plans
public attitudes and perceptions of health services. These were undertaken in a variety of
settings including the community conference, events such as refugee week and the day of
older people. In addition the website was tried as a way to find out what local people thought
about some national and local initiatives.
The PCT was actively engaged in several events throughout the year. Some of these were run
by the PCT — like public meetings, special health promotions (Chimes, Pavilions), a health
fun day featuring a five-a-side football tournament, participation in events organised by
voluntary organisations. At these events the PCT displayed and made available a wide range
of information for the public as well as using the event to talk to local people about the
information on display, their specific problems or concerns and about how the PCT could
improve services, including information.
The opening of the first primary care centre in the borough highlighted the development of
PCT services in Hillingdon. To raise public awareness of Hesa Primary Care Centre in Hayes
a series of open days where the public were invited on tours of the building were arranged.
Four days in total were held and approximately 300 people from the community were shown
around the building and also given the opportunity to talk with staff about any concerns,
problems or ideas they had about local health services. The building’s formal opening was
also attended by a selection of local people, including a large representation from the refugee
and asylum seeking community.
Competitions were held throughout the year, usually in co-operation with Sunshine
magazine. These were used to gauge interest in the magazine and to highlight specific issues.
In addition the PCT teamed with the local Gazette newspaper on stop smoking. This eight-
week editorial co-operation resulted in a significant rise in referrals to the stop smoking
service. The PCT also engaged with local schools, asking pupils to illustrate the 2003/04
annual reports with artwork representing various healthcare professions. Students from St
Laurence Church of England Primary School were invited to the annual general meeting and
were presented with £200-worth of gift vouchers by the chair of the board,

Providing information to hard to reach groups
The PCT is still limited in its ability to provide information in a wide range of languages.
Following the advice of the Race Equality Commission, the PCT strives to produce easy-to-
understand information. Through participation at events organised by the hard to reach
groups, the PCT was able to distribute some information materials. At the same time speakers
from the PCT (such as the chief executive and representatives from public health) were able
to engage with these groups and hear some of their comments about services and how they
might be improved in future.
Contact was made with some groups, such as voluntary organisations representing Somalis,
Asian women and the refugee community. However, much more effort needs to be put into
this area, although much work has been done through the HOPE project. HOPE (which
stands for health, opportunities, promotion and education) is a coalition of local agencies
working specifically to meet all the needs of disadvantaged groups in Hillingdon, specifically
targeting asylum seekers, refugees, single homeless and travellers.




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UNITE annual report 2004/05: past and future plans
Improving access to information
The aim of the annual Guide to Services is to provide the entire population with as much
useful information about the PCT services as possible including how to access those services.
The PCT produced a comprehensive guide (48 pages) distributed to over 120,000 households
directly by the local authority through Hillingdon People magazine as well as an additional
15,000 though a local parenting magazine (Sunshine) and other usual channels. Feedback on
this guide has been excellent. We have had spontaneous letters and phone calls thanking us
for producing such a useful guide and numerous requests for additional copies for
distribution both to individuals and to organisations. The guide is also available on the PCT’s
website.
As mentioned previously, a wider range of information about health services and specific
health conditions has been distributed throughout Hillingdon over the year. There are still
many gaps, most particularly in mental health, and this deficiency is being addressed.
One project, which is now serving as a model for further co-operation, was the joint
production of information about flu jabs. A folder and information materials about flu, how
to keep safe, warm and healthy in the winter months was designed, produced and distributed
in partnership with Age Concern Hillingdon and social services. This resulted in the
production and distribution of 10,000 flu packs (folder containing various booklets and
leaflets as well as local winter information card).
The PCT also worked with Hillingdon Carers and social service to produce a registration
form for carers. Distribution of the 28,000 forms is continuing.
Further projects with these groups and others — such as local groups raising awareness of
HIV/AIDS — are progressing and more co-operation and joint production of information is
expected to continue.
The PCT will also continue to participate in as many events and activities as possible in the
coming year.

Other communication and access developments
A variety of other developments took place during the year and continued into 2005.

Website
The PCT website is undergoing a total redesign and reorganisation of its structure. This
should result in a much more active web presence and the ability to use this medium to much
better effect. The intention is to ensure that all services, including individual clinics, are able
to keep information about services and access to those services up to date and easily
accessed. This will be possible through an improved content structure — how the information
is organised — as well as a content management system that allows for easy editing and up
dating of information. Delays due to funding and manpower have meant that this project was
not able to be completed in the last year. However, the new website should be active in the
first half of the new financial year.

Multi-media
The use of multi-media is an area where the PCT has previously been conspicuous by its
absence. Two projects in 2004/05 have allowed the trust to expand the mediums it uses to


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UNITE annual report 2004/05: past and future plans
communicate with the public. First, a pilot plasma screen project located in Uxbridge Central
Library displays a 30 second “advert”: 20 seconds of graphics and 10 seconds of “message
board” where the trust can change messages to help promote services, encourage
participation in events or give general health advice. Groups, organisations and others who
work closely with the PCT to “advertise” can also use this. For example, the screen can be
used to help recruit people for the Public and Patient Involvement Forum and Public Panels.
A series of seven, 30-second films were also produced (stop smoking (2), mental health,
Patient Advice and Liaison Service (PALS), Expert Patients Programme, how to cut toenails
properly and working for the NHS). These are available for use wherever there is a TV or
suitable screen (and location) within the borough and will be used on the trust’s website.
Audio tracks can be used for talking newspapers and information on radio (for example,
Hillingdon Hospital Radio).
In the coming year, the PCT hopes to be able to use film much more. This should help with
making sure a variety of information is available in various languages and formats to a wider
range of people.

HAVS (Hillingdon Association of Voluntary Services)
Working with the Health and Social Care Project expanded significantly. All information
leaflets and new materials distributed by the PCT are given to HAVS for comment and
distributed to voluntary sector groups. Information is often put in the HAVS newsletter about
new information available from the PCT. This work is expected to continue and to expand.

Conclusion
Although the PCT has significantly improved the production and distribution of information
to the public, there is still much work needed. Despite the lack of resources, both financial
and manpower, UNITE and the PCT will continue to support the various initiatives and
communication strategies now being developed for all services.

Expert Patients Programme
The Expert Patients Programme is one of the most important initiatives that the PCT that
UNITE has fostered in the past year. Known as EPP, it is a government initiative to help
people living with long-term health conditions to maintain their health and improve their
quality of life through self-management courses led by lay people. What makes the
programme special is the sharing of skills and experience with other people who deal with
the same problems and experiences, even if they do not share the same condition.
A three-year plan has been written and passed by UNITE. This is available on request or on
the PCT website.
As well as continuing to provide a minimum of four courses a year, future planned
developments include working more closely with Hillingdon Hospital and providing “add
on” modules on specific conditions — for example, diabetes and rheumatology. The
programme is also exploring ways to work closely with other providers of the course in
Hillingdon in order to provide at least one evening course in the year.




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UNITE annual report 2004/05: past and future plans
Appoint an Expert Patients Programme co-ordinator
The Expert Patients Programme Co-ordinator was appointed in January 2004 with the
following responsibilities:
   Promoting the course both to healthcare professionals and the general public
   Keeping records of participants and tutors
   Completing official course paperwork and letters to participants
   Booking accommodation and organising transport when required.

Strengthen public panels and help them link to other patient
participation groups
Three public panels reflecting the three localities in Hillingdon have been active for several
years. The three — North Hillingdon, Uxbridge and West Drayton and Hayes and Harlington
— each have a chair who is also a member of UNITE. All three panels are actively looking
for new members.

Hayes and Harlington
Public panels meet approximately every six weeks for the Hayes and Harlington locality in
Coldharbour Lane Baptist Church. The aim of the group is to reflect on PCT issues affecting
patients and the public in the area. This is done by meeting with PCT officers when new
services are planned. Members of the panel have the opportunity to discuss and shape the
development of those services with the PCT officers.

Uxbridge and West Drayton
Uxbridge and West Drayton public panel has encountered considerable challenges in
maintaining an active group. The idea is to have a virtual, web-based public panel. Plans for
this, however, rely on the successful launch of a new website by the PCT. In early March
2005 the PCT signed the final documents that made possible the development and launch of a
new website. It is planned that the Uxbridge and West Drayton public panel will use a
specific area on the new website to engage public interest and pose questions relevant to
public, patient and carer involvement in local health services.

North Hillingdon
The opportunity to have a seat on UNITE enabled the communication process between the
customer and provider of primary care to function in a more understandable and meaningful
way. The fact that the public panel is made up of a cross section of interested members that
includes those representing groups of people (residents associations, community groups and
others) ensures that a broad view is formed of the services provided and any comments or
suggestions we might make are always listened to.
The public panel plays an active role in monitoring and advocating health services in
partnership with Hillingdon PCT.

PALS (Patient Advice and Liaison Service)
The PCT has a well established Patient Advice and Liaison Service (known as PALS) that
provides service users with advice and assistance if they experience any problems with local
services. This feedback is used to help influence changes and improvements in services.


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UNITE annual report 2004/05: past and future plans
PALS can be contacted on 01895 452 088 or 089 or 111 or by email
(pals@hillingdon.nhs.uk).

Develop different ways to involve the public and users
Involvement with the public and users is being pursued in its broadest sense. The PCT is
finding ways to ensure its information about services and other developments are widely
circulated. But this alone is not sufficient.
Appropriate people representing the PCT are available to speak at meetings where questions
can be answered and ideas and concerns about health services can be discussed. The PCT
participates in as many events as possible that are organised by others, giving as much
support as possible from the PCT side.
Work has concentrated on creating new relationship and strengthening relatively new and
existing ones. Two examples of how the PCT has developed different ways to involve the
public and users are with Hillingdon Carers and Age Concern. Joint information has been
produced and distributed with these organisations. The PCT participates and supports event
organised by these two groups and is continuing to work closely with them to improve
services for the whole of Hillingdon. Throughout the coming months, the PCT hopes to be
able to deepen its work with these groups as well as become involved in other organisations,
particularly those that work with hard to reach or ethnic minority groups.
The PCT continues to strive to find new ways to ensure the public, patients and carers work
closely with the trust to meet health needs in Hillingdon. Over the year the PCT did this by
being present at meetings and events where its participation was appropriate (for example,
Refugee Week, Carers Week, Day of Older People, Asian Women’s public meetings). The
PCT also used several of these occasions to solicit views on health services both formally and
informally.
Being present “on the street” included displaying and providing information in public spaces,
like the Chimes and Pavilions. The PCT also is experimenting with more street-based
“advertising”. Notable examples during the year were handing out leaflets to shoppers in
Hayes inviting them to drop into the Hesa Primary Care Centre for a tour of the building and
to hear about services based there prior to its opening to the public.
Leaflets explaining stop smoking services were distributed in three localities throughout the
borough by various PCT staff. This gave the PCT an opportunity to engage with the public
and hear their ideas and concerns about this service. Promotions of other services, such as
continence, also provide opportunities for the trust to hear what people think. A week-long
promotion of services, including the use of short films, took place in the Chimes in January
2005, followed in February with participation in a week-long health fair at Uxbridge Central
Library. All these initiatives gave PCT staff a chance to talk to — and most importantly listen
to — the public about what they think is important and their comments about the PCT
services and how these might be improved.
The PCT tried to use every opportunity — be it public meetings held by the trust itself, or
attending other meetings and events — to talk to the public and patients about their concerns
and address any problems as well as explain policies and plans.



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UNITE annual report 2004/05: past and future plans
While the website is still not an active tool in two-way conversation, the PCT hopes that this
medium can be exploited more in the coming year, but not to the exclusion of face-to-face
contact with people and groups.

Copy letters to patients about their care and treatment
The NHS Plan made a commitment that patients should be able to receive copies of
clinicians’ letters about them as of right. A working group convened by the Department of
Health in 2001 set out the background to the initiative in a report in February 2002
(www.doh.gov.uk/patientletters/issues.htm) and is in two parts: draft guidelines and
recommendations to the Department of Health. Best practice guidelines for implementation
are also available. Pilot projects reports also contain detail about specific issues covered in
the guidelines.
The policy says all clinical letters should be copied to patients if written consent is given. The
PCT needs to ensure that systems are in place to involve patients on an individual basis.
Research has shown that patients are more active in their personal health care if they receive
copies of letters and that if they have information on their treatment they are more able to be
involved in the decisions concerning their health.
The new national contract for the provision of general medical services (sometimes known as
nGMS) with GPs was expected to put into place new arrangements for practices to provide
letters regularly to patients, but this has not been followed through in the final contract that
put into place new arrangements for the funding and operation of GP services. However,
there are no additional funds available for copying letters.
In March a workshop on copying patient letters was organised by the North West London
Strategic Health Authority. Following the workshop, UNITE discussed the need to ensure the
PCT established a workable policy and system for copying letters to patients.
Each PCT decides how to deliver this policy in the most cost effective way to ensure this
policy is carried out throughout the organisation. In Hillingdon PCT some services regularly
copy letters to patients, while others do not. Despite the current financial constraints on the
PCT, UNITE will monitor progress in ensuring this policy is carried out.
North West London Strategic Health Authority has not yet established a sector-wide
approach.

Help the Patient and Public Involvement Forum develop
A member of UNITE (and often someone from the PCT) is present at PPIF meetings.
Through actively taking part in these meetings, the PCT hopes to support the PPIF with its
chosen work plan and work collaboratively with the group. At the same time as different
people from the PCT attend, a wider range of people understand what PPIF is trying to
achieve and do and can help and support it in its work.
While the PPIF is to retain independence, the PCT wants to give appropriate support and help
where it can. Meetings with the chair of PPIF have tried to identify ways the PCT can
strengthen links and provide real help.
A member of PPIF has often attended UNITE meetings and this arrangement is hoped to
become permanent in the coming year.

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UNITE annual report 2004/05: past and future plans
Two major developments will affect the work of the PPIF during the coming year. First, the
government has decided to merge existing forums so that there is only one forum per PCT
area. This is expected to help the forums develop.
Second, Scope, which is the forum support organisation for both forums (PCT and hospital)
in Hillingdon, does not wish to extend its contract beyond the end date of 31 August 2005.
Alternative arrangements are under consideration to provide support to the forums to 31
August 2006 when other arrangements are expected to be made.

Annual survey
Surveys are only useful if the information gathered in them can be analysed properly and
those results used to make changes or improve services.
The PCT’s annual patient survey helps give a picture of some concerns raised by patients and
gives valuable information that can be used by the PCT to improve. Groups such as health
visitors, podiatrists, speech and language, for example, also carry out surveys and design
questionnaires in order to find out what patients want and how to change and make services
better. In addition more general questionnaires are used throughout the year to gain an insight
into how people would like to see services changed and improved. While many of these are
informal, they do provide valuable insight into how the general public views local health
surveys.
Department of Health surveys concentrate on broad issues. The PCT contributes to these as
and when possible.
The local authority also carries out a variety of surveys each year, some of which have
questions relating to health. The PCT is working closely with the local authority in order to
make sure the health and social care economy takes advantage of any such surveys.
Given the number of surveys already undertaken, UNITE did not itself instigate its own
survey. Instead it has been working closely with the Patient and Public Involvement Forum
(PPIF) to see how this group might help gather concrete information about what and how
people wanted local services to improve or change.
The idea of “mystery shopping” — where someone goes into a service, like a GP surgery,
health clinic, dentist, optician and reports back what was wrong (or right) — is something
that UNITE thinks may be more valuable than another survey. UNITE hopes the PPIF may
be able to help with this.

Measure how much users, carers and the public are involved in
primary care trust work
In November 2002 the Hillingdon User, Carer and Public Involvement Task Force developed
a framework to support continuing involvement of service users and carers in health and
social care. As part of the framework a peer assessment tool was developed to gauge each
member organisation’s progress against a range of objectives. The tool provides an
opportunity for organisations to:
    Reflect on their responsibilities for involving public representatives in health and social
     care
    Think about areas for improvement

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UNITE annual report 2004/05: past and future plans
    Focus their improvement activity on areas that are relevant and important to service
     users, carers and the public
 Feed the results of the assessment into high-level strategic plans.
Although the task force no longer meets, UNITE believes that use of the peer assessment tool
will be invaluable in assessing its work and strengthening the PCT’s commitment to public,
carer and user involvement.
UNITE intends to use the tool to pose a series of questions or make a statement that should
be answered within a range of possible answers through interviews with various parts of the
PCT service as well as organisations with which the PCT works. The peer assessment tool
provides a record of progress against or baseline assessment for future measures of progress.
A team of assessors would work together to ensure that effective user, carer and public
involvement in Hillingdon is being practiced.
The original criteria for the assessment foresaw information being collected through a variety
of methods including paper based questionnaires. Whatever the method, the systematic
collection of comparative information is key.
The assessment will cover the following areas and themes:
    A user, carer and public centred culture in the organisation
    Structures and processes to support involvement of service users
    Resources to support involvement of service users
    Polices and/or strategies that support user involvement
    Communicating with service users
    Capacity to deliver (involvement activity)
    Accountability and responsibility for user, carer and public involvement
    Monitoring and continual improvement
    Keeping records, using collected intelligence
    Reporting on progress

Appoint a patient, carer and public involvement co-ordinator
The PCT is under considerable financial strain. At present it is not able to balance its budget,
something that it is obliged by law to do. Because of its deficit, the PCT has put into place a
two-year financial plan that it hopes will help. Because of the lack of financial resources, the
PCT has not been able to appoint a Patient, Carer and Public Involvement Co-ordinator.
Despite the lack of money to fund such a position, the PCT (and UNITE) continue to look at
how the role of such a co-ordinator could be funded.

Future plans
In its first year UNITE has managed to make some improve in many, if not all, areas of its
work plan. The yearly work programme will be reviewed and assessed quarterly by UNITE
and revised on a yearly basis.
For the coming year, UNITE plans to:



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UNITE annual report 2004/05: past and future plans
    Continue to improvement the PCT’s information to the public, patients and carers. This
     will be done through a variety of media (including film and a new design website). Work
     with hard-to-reach groups will continue as will joint work with both voluntary
     organisations and the local authority. The PCT will also make efforts to improve the
     accessibility of its information, particularly for people with disabilities and whose first
     language is not English.
    Build better links between the PCT and the Patient and Public Involvement Forum.
     Although the PPIF is an independent grouping, UNITE will continue to support its
     activities as much as possible and hopes that a permanent representative from the forum
     at UNITE meetings will help in that process.
    Continue to expand and support the Expert Patients Programme (EPP).
    Audit and ensure that the public, patients and carers are fully involved in all service
     changes by using the peer assessment tool or another developed for this purpose.
    Monitor and ensure that the PCT is taking into account ethnic and cultural diversity in
     the provision of services and in all its activities.
    UNITE intends to use the peer assessment tool (originally developed by Hillingdon User,
     Carer and Public Involvement Task Force) to pose a series of questions or make a
     statement that should be answered within a range of possible answers through interviews
     with various parts of the PCT service as well as organisations with which the PCT
     works. The peer assessment tool provides a record of progress against or baseline
     assessment for future measures of progress. A team of assessors would work together to
     ensure that effective user, carer and public involvement in Hillingdon is being practiced.
    Continue to develop ways to find out what patients, the public and carers think about
     services and then act on that information to improve services.
    Conduct at least two surveys of public, patient and carer satisfaction on the production of
     PCT information and its engagement in the borough.
    Ensure that patient, public and carer interests are both represented physically and
     supported in practice-based commissioning.
    Through UNITE’s representative on the Professional Executive Committee (PEC)
     provide guidance and support to ensure adequate care is taken to involve patients, the
     public and carers in health service developments throughout all services, including GP
     practices, pharmacies, opticians and dentists.
    Ensure that patients, the public and carers are aware of the letter copying policy of the
     PCT and their rights to receive copies of letters relating to their healthcare. UNITE will
     monitor that a system and policy on copying letters to patients is established and used.
    Make certain that patient, public and carer involvement in the PCT’s long-term
     conditions strategy and monitor its progress on a regular basis
    Develop a way to monitor and ensure that inequalities are taken into account within the
     patient, public and carer involvement agenda throughout the PCT




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UNITE annual report 2004/05: past and future plans
    Continue to support the existing public panels (Hayes and Harlington and North
     Hillingdon) and help them build better links with the PCT and offer help and advice
     when asked.
    Use the PCT’s website area “Have Your Say” as a tool for wider engagement with the
     public through surveys and information, creating a new and robust way of engagement.




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