Attendees (taken from signing in sheet)
Charlie Sheldon, Chair / CS / Chief Nurse
Margaret Howat / MH / Head of Patient Experience, HUH
Eileen Bryant / EB / Head of Adult Safeguarding, HUH
Caz Brown / CB / Lead Nurse, Vulnerable Adults
Charity Hall / CH / PPE Lead, Learning Difficulties Services in Hackney
Michael Vidal / MV / LINKS
Emma Craig / EC / Chair, Health Watch Hackney
Ida Scoullos / IS / Chair of the Patients Network in Hackney
Laurie Johnson-Mathieson / LJM / Community Development Worker, City & Hackney
Steven Reading / SR / Dementia Support Manager, Alzheimer's Society – Hackney & City
Lin Lahm / LL / Age UK
Sadhna Chand / SC / Public Involvement & Information Manager, PALS
Nursel Tas / NT / CEO, Derman
Aliya El Agib / AEA / Director, BEMWG
Matthew Hodson / MXH / Nurse Consultant - COPD (ACERS), HUH
Lesley Haines / LH / Patient Experience Support Officer, HUH
Elizabeth Slee for Hilda Walsh / ES / Locomotor
Apologies Received
Sarah Weiss, Joint chair / SW / Public Governor, HomertonUniversityHospital
Ronald Patterson / RP / Carers Representative
Yasar Zaman / YZ / Hospital Chaplain, HUH
Sophie Fagan / SF / Carer's Support Specialist, HUH
Welcome and Introductions
Charlie Sheldon (CS), Chair welcomed everyone to the meeting. He explained that he would be leaving the Trust in June and that the new Director of Operational Development would probably be attending the next meeting with a view to becoming the next Chair of the Group.
Michael Vidal (MV) introduced Emma Craig, Chair of Hackney Health watch to the Group. Emma would be attending all future meetings in place of LINKS.
Minutes from last meeting
Page 3 – Eileen Bryant, Head of Safeguarding Adults. Bullet Point 3 replace Competency with Compassionate
Subject to the above the minutes were agreed as an accurate record of the meeting.
1 / IMPROVING THE USER EXPERIENCE
1.1 / User Feedback on Safeguarding Adults
Eileen Bryant (EB) reported that Safeguarding Adults PartnershipBoard would like us to link in with other existing structures in the organisation. EB suggested this group be used as the forum for safeguarding issues. UEG agreed – Terms of reference to be amended to reflect this.
1.2 / Liverpool Care Pathway
Margaret Howat had received a message from Sarah Weiss (SW) asking that this matter be discussed at the next meeting as SW was unable to be present at this meeting. This was agreed.
Lin Lahm(LL) explained why she wanted this brought to the meeting. She feels there is a need to explain the difference between the Palliative Care Model and the Do Not Resuscitate Programme. Everyone should be made aware of the differencebetween the two.
  • CS reported HUH’s Do Not Resuscitate Form is being looked at again based on clinical discussions. We need to ensure we have everything right
  • Assurances need to be made that we do as much as possible to keep a person alive. This is nothing to do with age but quality of life.
  • It was felt that the Do Not Resuscitate Policy be looked at again as more information needs to be added.
  • Steven Reading (SR) suggested we also look at engaging Nursing Homes as there is the perception amongstolder people that they are not being cared for in this regard. There is a considerable difference between hospital care and care in nursing homes.
  • Up-to-date information is needed for both patients and carers.
  • Sadhna Chand (SC) was asked whether she kept any leaflets for patients and their family on Liverpool Care Pathway. SC explained that there was none but that she referred people to the Cancer Office.
  • CS felt information should be made available to everyone and asked SC to put something together re: Liverpool Care Pathway for discussion at next meeting. MH advised that “Dying Matters” website is a good place to visit re: wording.
  • Nursel Tas (NT) said that family are not always told when a relative has been put on the Liverpool Care Pathway - some have not even being given an explanation of what the pathway is.
  • LL to provide copies of DVD and Papers on Pathway at next meeting.
CS asked that this come back to the next meeting. As this is a very difficult subject Dr Freur, Palliative Care Consultant be invited to the next meeting with a view to understanding this pathway.
1.3 / Taking the work forward
CS reported that HUH currently involve Hospital Governors in a lot of areas throughout the trust, e.g. discussing certain piecesof work HUH are hoping to do/carry out throughout the year. Discussions have taken place as to whether any members of this group would be interested in taking part. SR said he would definitely be interested especially if it was anything connected with Dementia patients. Other members also expressed an interest and CS said he would update the group further at the next meeting.
Michael Vidal (MV) then asked whether it would be appropriate for Cost improvement Programmes to come to this meeting. CS was not happy to debate this here but is happy to share the document - this currently sits with the Governors but it would be useful for users to identify inefficiencies.
MH reported that Access Informationis being looked at:-
  • PALS leaflet in the process of being changed.
  • Looking at care information that should be made available in the community.
  • Surgery procedure leaflets will be available shortly.
Charity Hall (CH) then asked if there were any resources for those unable to communicate. MH explained that Caz Brown (CB) had found something on this and would discuss this outside of the meeting. CH suggested for those with learning difficulties we could use the pictures from the Purple Book.
CH/MH and CB to take this forward.
1.4 / Updates from Groups
Patient Experience
  • Patient Experience Strategy is going ahead.
  • Carrying out various patient surveys throughout the Trust and community services.
  • Inpatient surveys are being undertaken at Mary Seacole Nursing Home and health centres in our area.
Learning Disabilities
  • Learning Disability Survey has started.
  • Lots of feedback has been received on what changes need to be made.
  • Bart’s Health has developed a Patient Passport - MH to check whether this was something the whole of NE London could use.
  • SR advised that the Alzheimer’s Society produces “This is me”. Every patient coming into hospital whether as an inpatient or outpatient should have a copy. If a patient does not have a copy they are offered one.
  • SR would bring a copy to the next meeting for information.
PALS - Information Leaflets
  • SC asked for all users to send her copies of their leaflets. These would be useful both here and in the community.
Hackney Link
  • MV reported that Hackney Link will in future be Health Watch Hackney. They are now also responsible for young people and children.
  • Emma Craig (EC) advised that the new website is in the process of being developed.
Locomotor
  • Access Policy is being revised
  • The question of how many appointments should be missed before a patient is removed continues to be an issue. Locomotor would welcome any comments and suggestions from the group as to this.
  • CS advised that the text reminder service is currently being rolled out now and is working very well.
  • Ida Scoullos (IS) asked what happens when a patient arrived 10 minutes late. It was explained that their appointment still goes ahead but will be shorter.
  • IS said that patient transport is a big problem for those who rely on this to get to their appointments. It was explained that Locomotor always try and accommodate elderly patients but this is not always possible.
  • MH confirmed that Patient Transport is currently being looked at.
Alzheimer’s Society
  • SR announced Alzheimer’s Society Want to create a network of one million Dementia Friends across England by 2015
  • He explained that people with dementia sometimes need a helping hand to go about their daily lives/ feel included in their local community. Dementia Friends give people an understanding of dementia and the small things they can do to make a difference to people living with dementia. This could be from helping someone find the right bus to spreading the word about dementia.
  • There are two ways to get involved :- a) become a Dementia Friends Champion or become a Dementia Friend full details of which can be found on the website Training is available and SR will circulate full details to the Group.
  • CS announced that he is keen to have equality around dementia care.
Breathe Easy
  • MH explained that the abovegroup is run for people with respiratory problems – membership is currently very low. Meetings taking place on the first Wednesday of every month between 1330 and 1530. If anyone would be interested in joining this Group to contact MH and she would pass on more information.

2 / FOR INFORMATION/TO NOTE
2.1 / Terms of Reference
Changes to be made as follows:-
Page 1Membership:-
  • Practice Development Lead to read “Vulnerable Adults Lead”
  • Health watch Hackney to be added
  • Mental health advocacy to be added
Page 2 Paragraph 4 - Quorum
Whole paragraph to be deleted as it is felt this is restrictive.
Paragraph 7 – Duties and Responsibilities
fourth bullet point - remove ‘ensure’
Add the following
Act as the Forum for engaging with users in Safeguarding Adult issues
There being no further business the meeting concluded.
Date of Next Meeting:
1600 to 1730 on Monday24th June2013, Conference Room2, Education Centre, HomertonHospital