Wolverhampton Patient Advisory Cancer Team

(PACT)

Notes of a Meeting held on Wednesday,4th November 2015 from 10.00 to 12.30 pm

at ‘The Beeches’, Penn Hospital, Wolverhampton

PRESENT:David Hellyar (DH)Acting Chair

Pat Roberts (PR)Patient

Diane Wright (DW)Patient

Manny Samra (MS)Macmillan GP/CCG

Ranjit Khular (RK)CCG Commissioner

Kath Curley (KC)Staffs & W’ton Cancer Advocacy Support Project

Sharon Sambrook (SS)Brain Tumour Support Worker Jacqui Cutler (JC) Minutes

APOLOGIES:Robin Comley, James Owen, Janet Aldridge, Kate Fernandez, Tracey Weetman, Joanna Strong, Michelle Winstone, David Rowlands.

1.Introduction and Apologies

David welcomed everyone to the meeting, including Sharon Sambrook, Support Worker from the Brain Tumour Support Group. Sharon told us that they have a thriving group here in Wolverhampton, who meets regularly. Sharon deals with patients from the larger Black Country, not just Wolverhampton, although they meet in Wolverhampton – at The Lighthouse Media Centre in the Chubb building. Ranjit Khular also introduced himself. He is a Commissioner at Wolverhampton CCG, and has contact with both Pat Roberts and Manny Samra.

Apologies were given for those members who could not attend.

2.Minutes of the previous Meeting

These were agreed as correct.

3.Matters Arising

a) Promotion of Clinical trials in Deansley Centre

As James wasn’t here we couldn’t add much more to this. Ranjit asked if the promotion of the Clinical trials was a new thing. DH said that it tied in with a meeting he had attended at New Cross back in February. One of the things that stood out from the meeting was that the uptake is very poor in Birmingham and the Black Country for Clinical trials. Outside of this geographical area there is a better uptake. David had asked if this was “socio-economic” related. The answer is probably “yes”.

There followed discussion at our meeting around this. PR said that a lady called Vanda would know and could perhaps come and talk to us about why this is, in relation to Wolverhampton.

MS added that the Clinical Nurses are involved in Clinical trials, and she knew that in the Cardiology area there was a man named James Cotton who was active in the Clinical trials there.

b) Physiotherapy/Occupational therapy trials in Cancer

Manny Samra said that talks are ongoing, but it needed a manager/senior manager from RWHT to “buy into this” for it to go ahead. As we have heard from Joanna Strong at previous meetings, although the Breast Cancer trial bid is a separate strand it comes under the same “umbrella”. That is, the emergence of very strong evidence that Physio and Occupational Therapies have very positive results in Cancer patients.

Manny said that Macmillan are very keen for this to go ahead, but it is negotiating with the Hospital. There followed discussion around this. She said that David Loughton from his perspective would be happy that this went ahead as there would be a 3 year funding.

Ranjit Khular then spoke about the other thread that runs through Cancer and the patient’s “journey” – ‘Dying Matters’. He has been very involved in this in attending different seminars and days, including the Community Event in Wolverhampton in June. He said his experience has been how hard it is to get people to talk about this subject.

PR felt that this area needed far more publicity and focus in local publications, for example the ‘Express & Star’. There must be a journalist/reporter at the ‘Express & Star’ focusing on health issues? DH made a note.

Should we be looking at a “wider audience” for this, as it is not just Cancer, after all, but Dementia sufferers and others? MS explained that Dementia patients are as time limited as Cancer patients. It is not just their minds that are affected when they have this disease. Other vital systems and functions within the body very soon begin to shut down and to fail.

Kath Curley told the group about the event she had been involved with in May in Stoke which was about ‘Dying Matters’ (although not called this).

Many different groups were involved, and it was a very successful day. Their event was organised through the Beth Johnstone Foundation. Kath said she would see what she could do and “put together” for PACT in the way of some contacts/pointers, based on the success of the day in Stoke, which could help us for a future event in Wolverhampton.

There then followed general discussion around dying and ‘Dying Matters’, with relation to Cancer and Dementia, and how important it is to be “out in the open”. Planning and talking in advance about this is vital.

The group then talked about a future event in Wolverhampton. It was felt that an event entitled perhaps, ‘Live Well Until the End’ could work well rather than ‘Dying Matters’. The overall feeling was that The Molineux would be an ideal venue for such an event as it is central, and would have the support and publicity of Wolves. Maybe, with the backing of high profile figures such as Rachel Heyhoe-Flint or Steve Bull associated with Wolves and Wolverhampton, it could be very strong.

4.PACT and the CCG

David Hellyar explained to Ranjit and Sharon the background to their being invited, and why we were hoping that Sarah Fellows would also be here. Ranjit said he could take this back to Sarah and emphasise that she needs to come to a meeting. DH moved on to the area of the relationship between PACT and the CCG. He said that we would like to extend to the CCG an invite to become a part of PACT and attend meetings as representatives from RWHT do. He said that it should be a mutually beneficial arrangement. RK agreed that this was very important. David asked, would the CCG be amenable to Ranjit or a colleague coming to our meetings every 6 weeks? Ranjit thought definitely it should be possible.

5.RWHT update

As James Owen could not attend today, there was no news for this Agenda item.

6.‘Behaviour Code of Practice’ and ‘Terms of Reference’ – documents for review in November 2015

David said that this item could be deferred to a future meeting.

7.Any Other Business

Sharon said that she will definitely come to a future PACT Meeting and would like to bring a member(s) of her group along, as well.

8.Date of the next Meeting

This would probably be the 13th January 2016, however next year’s meeting dates had yet to be decided on and booked. Members would receive a list of PACT Meeting dates for 2016 as soon as they were confirmed.

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