List of public pages created with Protopage

Untitled 1


Menu 1


Rich sticky notes


-----Original Message-----
From: Incledon-Jones Gail
Sent: 10 January 2006 10:10
To: Incledon-Jones Gail; Parsons John; Horswell Helen; Georgeson Debbie; Liley David; Giddings Sue; Gaylard Jane
Cc: Williams Stephen; Incledon-Jones Gail
Subject: West Sussex LTC meeting - 26.1.06

Dear Colleagues
As you are aware, the next West Sussex Long Term Condition meeting will take place on Wednesday 26th January 2006 in the Durrington Room at AAW tPCT, The Causeway at 2.00pm.
Could I please have agenda items by Friday this week (13th Jan). Attached are the notes of the last meeting, held on 4th November 2005, for ease.
Stephen, I believe Jane Gaylard will be representing you at these meetings from now on and have had confirmation from Jane that she will attend on 26th January - thank you Jane.
Sue, I understand you will be sending a representative to these meetings - please may I have the name and contact details.
Thank you.
Kind regards

Gail Incledon-Jones
PA to Dr Alison Smith
PEC Chair and Director of Clinical Modernisation
Adur, Arun and Worthing Teaching Primary Care Trust
Tel: 01903 708462






Subject:             Initial West Sussex LTC meeting

Date:                           4th November 2005


Time:                          2.00pm to 4.00pm


Venue:                        Arundel Room, AAW tPCT, The Causeway


Chair:                          David Liley


Minuted By:

David Liley






John Parsons – Western Sussex PCT

Helen Spooner – Western Sussex PCT

Debbie Georgeson – Mid Sussex PCT

David Liley - AAW




Sue Giddings – Horsham & Chanctonbury PCT

Steve Williams – Crawley PCT









Purpose of meeting


  • To share experiences of managing the LTC NSF
  • To consider opportunities for cooperative working
  • To consider a County wide [West Sussex] perspective on LTC’s






·         Agreed to share performance monitoring information, baseline analysis

·         To check progress on Carole Mattock’s letter of the 30th June 05. Completed performance monitoring proformas for LTC NSF returned by 8th July 05 to SSSHA. This information was to be collated and used to inform how the NSF LTC’s would be managed within the TCCP working groups. No response to that so far from Julia Ross or Carole Mattock DL to check on progress. Note that in the meantime work has started on establishing LIT’s locally, negotiating funding for a Neurology Network Manager, and a variety of other local initiatives including specialist nurses.

·         Neurology Network Manager – The MS Society have agreed to fund a 15 month Neurology Network Manager post working across Surrey and Sussex Neurology Networks. Recruitment will commence early in January 2006. Copies of the proposal + draft JD + Person Spec’ are available from Steve Sparks [SHA Specialist Commissioning] or David Liley [AAW – Ass’ Dir’ Clinical Modernisation].  NB – Steve’s role has recently changed and to avoid this work being dropped he has asked David Liley to take a hold brief, David has links with the MS Society nationally.

·         Expert Patient Programmes – suggestion that LTC’s should develop an education module for inclusion in the Expert Patient Programmes running in Sussex. Prior to developing a module locally LTC LIT’s might secure a session on local Expert Patient training days.

·         Managing LTC work. The group recognised that a number of measures in the NSF LTC [see Quality Requirements 1,5,6,7,10] are impossible for PCT’s to provide without interagency co-operation. It could be argued that some of these measures are not the ‘core’ business of PCT’s.


Local Strategic Partnerships might be commissioned by PCT’s [or a Sussex wide PCT through locality groups] to provide those aspects of the NSF LTC that clearly require broad based public sector action. This might include:


Ø      Creating person centred services

Ø      Community rehabilitation and support

Ø      Vocational rehabilitation

Ø      Providing equipment and accommodation

Ø      Supporting family and carers


This should:


ü      Encourage ‘all systems’ solutions

ü      Secure high level sign up to integrated service delivery plans

ü      Encourage partnership working and pooling of resources to tackle specific issues – structural under investment in some services, gaps in service provision, local problems

ü      Encourage a flexible and local approach to problem solving and resource allocation/planning

ü       Facilitate joint planning with primary care locality commissioning forums

ü      Encourage services and service planning to be more locally accountable and accessible


The group agreed to share these ideas with LTC NSF lead officers within SSSHA and TCCP and the other LTC NSF leads that were not able to attend this meeting.





























































Future work


a)      The group agreed that this initial meeting had been useful and that it would be useful to establish a West Sussex wide network supporting the NSF LTC + locality based LITs.


b)      Roles to take our West Sussex wide work forward:

a.      John Parsons will amend the Western Sussex LTC web site to show as a West Sussex LTC site and this will become a cornerstone to linking LTC work around the County.


b.      John will also produce a statement defining the aspirations and intentions of the NSF LTC network for West Sussex – in draft for comments. He will publish this on the site [see above].

c.      Helen Spooner and Debbie Georgeson to work on developing the ideas generated through the network and to discuss with key stakeholders.

d.      David Liley to act as chair and ambassador and discuss progress thus far with Steve Williams [Crawley] and Sue Giddings [Horsham & Chanctonbury].

e.      Notes to be copied to Carol Mattock + Julia Ross for information.


c)      To support future work we may focus on four key result areas covering LTC’s [both as narrowly defined – Neurology, and more broadly – Chronic Care agenda]:

a.      Rehabilitation [clinical and social]

b.      Education, learning and employment

c.      Assessment and review

d.      Communication Plan

Work in these areas should compliment TCCP programme work.



































Next meeting


DL’s PA to arrange meeting for January, notes to be circulated in advance for comment / correction. Next meeting will consider terms of reference and work plan for this group.








-----Original Message-----
From: Parker Clare []
Sent: 23 December 2005 13:22
Subject: TCCP Service User Group - Flyer 30 January 2006

Dear Colleagues,
Further to previous correspondence please find attached a flyer regarding the next meeting of the Transforming Chronic Care Programme Service User Group taking place on Monday 30th January 2006, at 2pm, at the Hawth Theatre in Crawley.  Also attached are the notes from the last meeting for your information.
I would be grateful if you could pass this flyer onto relevant contacts and advertise locally where possible. 
Apologies if you have already received these details and responded - we look forward to seeing you at the meeting.
Many thanks - and best wishes for the festive season.
Clare Parker
Programme Support Co-ordinator
PCT Alliance Development Unit
5th Floor, Overline House
Station Way
RH10 1JA

Tel: 01293 572136
Fax: 01293 572172

Help Make Your

Health Service Better


2-5pm, Monday 30th January 2006

The Hawth, Crawley, West Sussex  RH10 6YZ


You are invited to the second meeting of a new Group for people of all ages with long-term conditions, and their carers, who live in Surrey and Sussex.


At the first meeting in November the Group said:

·             We want to work with professionals and senior staff to share our experience and knowledge

·             We want regular, focused meetings and events

·             We want to develop patient held records and other information tools


On Monday 30th January at 2pm, we have the opportunity to explore with professionals the development of a patient held record for people with long-term conditions across Surrey and Sussex.


If you have a long-term condition, such as asthma, stroke, heart disease, dementia or diabetes, or care for someone who has, and you’d like to be involved in this important project, then this group is for you.


For more details and to book a place contact:

Clare Parker  01293 572136


Address:     PCT Alliance Development Unit,  5th Floor, Overline House, Station Way, Crawley,

West Sussex, RH10 1JA




Transforming Chronic Care Programme


Notes from

Help Make Your Health Service Better


Meeting held 17 November 2005

at The Hawth Theatre, Crawley




At the beginning of the session the group were asked why they came and what they wanted to get out of the evening:


·       The NHS doesn’t work around us, we have to work around it

·       The NHS is very discriminatory

·       I have something to offer…but want to know how to make a difference

·       I want to influence the Mental Health Trust

·       I want to turn a trickle into a waterfall

·       I want to give something back

·       The services aren’t joined up with social care

·       It’s DIY – I have to co-ordinate myself

·       Patients should define what information is needed – about me/about services

·       Professionals don’t tell people how to access things

·       The NHS needs to help people “play” and give them informed choices




At the end of the session the group identified and agreed the following actions:


Actions for the TCCP Team:



Write up the notes from the session and send out to the group



Circulate these notes to all the relevant NHS, Social Services and other organisations across Surrey and Sussex



Arrange for the group to meet again in the New Year



Ensure all information is clear and legible - in 18 point font



Identify and provide the group with PCT link names



Ensure that future events are also attended by professionals (including social care) for at least half of the session

Next meeting


Keep the group work charts so they can be referred back to next time



Rotate the time of meetings, as different times are suitable for different people.

The next session will be an afternoon in January

Next meeting


Let the Group know where members have come from – i.e. how many people from which locality



Actions for the whole Group;



Identify ways to reach out to people who can’t attend



Agree the purpose of future events, to ensure they have value - e.g. developmental



Capture lessons from what already happens in local groups and map good examples - e.g. patient led groups



Explore how to create and access opportunities for educating professionals – where it’s already happening, who is trained and how it’s being used



Develop an approach to Patient held records – (as in, for example, Salford).

Next meeting


Explore other methods for PPI to get involved and look for examples from other areas

Future meeting


Work with clinics/practices etc to help identify solutions to real problems identified by the group



Discuss how to find out about local support groups – advertise?



In the Group Work participants were asked to think about their vision of the ideal service and how they and TCCP could play a role in making the changes they’d identified.


Key concerns

Communication    - all of us /across health and social care

To be listened to

Better understanding of the patient/carer’s experience

Less discrimination/prejudice - challenge attitudes/barriers

Same standards for all

Availability of local services

Support to manage own conditions

Access to knowledge, equipment, tools


Suggested actions

Form/build on local support groups

Patients/users to educate professionals

Education for patients/carers

Work with professionals and senior staff

Use/develop patients/carers network for peer support etc.

Share experiences/knowledge

Outreach to isolated people/carers

Patient/carer friendly information – quicker access

Use data and IT more effectively

Focus on prevention

Joint improvement forums –patients and staff  

Involvement in PPI Forum; better use of e.g. PALS/EPP

Marketing/advertising, to get others involved

Regular, focused meetings/events

Contact numbers by PCT

Develop a Directory of Services

Develop a description of commonly used terms

Patients to hold own notes




Group 1

Why & What? (Us)

Vision and Accountability


Next Steps

·       How do we get health and social care to communicate and co-ordinate

·       We all need to communicate

·       Talking with people who understand

·       To listen!

·       Services and information are continuously linked

·       Ambulance staff learn to communicate with all people with disabilities and neurological conditions

·       Someone there I can phone – who knows me

·       Support when important decisions are being made

var _gaq = _gaq || []; _gaq.push(['_setAccount', 'UA-3138980-1']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://' : 'http://') + ''; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })();