Our information and support team are always out and about around the country, visiting hospitals, specialist centres and talking to medical staff about the experiences of pancreatic cancer patients. Our Support Manager Jeni Jones recently attended a focus group day in South Lincolnshire, to help facilitate a day of discussion for patients and carers:
I was involved in the focus day which took place on 26th September at New Life Conference Centre, Sleaford, Lincs.
The day was the brainchild of Lisa Dichmont, the Upper GI/HPB CNS at Pilgrim Hospital, Boston, Lincs. Lisa first got in touch with our information manager, Anna, who put her in touch with Jo Dowle from Southampton, as they already have a group running. Lisa was very passionate about setting up a group for this patient population, and had done a similar thing with the oesophageal group, to great effect, which is still going strong today. Her main focus of the day was that something could come out of it for the carers.
We had 2 pre-meeting planning times - one back in July where I travelled to Pilgrim Hospital to meet Lisa, and to tell her about the charity. Lisa was very keen and interested in what we are doing, and she was also keen to see how we could help. It was agreed that I would do a presentation on the charity, and also, provide materials and resources for the day. We then had another meeting of all the organising committee on 11th September, at the centre, so we could see the premises and what facilities were available. We ran through an agenda, and decided to have 2 breakout sessions in the pm - one for patients hosted by the CNS's , and one for the carers, hosted by the chair of the Lincolnshire Carers Partnership, Pauline Mountain. This lady is a wealth of knowledge, and is very keen that carers have a voice, and in PC, I think this is crucial.
On the day, the event was a great success. It was attended by more than 20 patients and carers, plus health professionals. I had asked Cliff Pettifor and Carole Challen to join me, as PCUK Voices. This came about as Lisa had asked the patients beforehand what they would most like to get from the day, and some had indicated they would like to talk to a post Whipples survivor. I did a presentation about PCUK-focusing on S4S and C4H. Also spoke about early diagnosis summit, APPG, and upcoming events. Also thanked Lisa for her enthusiasm and commitment for the whole thing - I know how much effort it takes for nurses, who are already snowed under, to even contemplate doing something like this outside of work, and she is to be commended.
We then had speakers from Macmillan and St.Barnabas Hospice. We tucked into a very nutritious and tasty lunch, and there was such a sense of community and interaction over lunch as people got to know those on their tables and shared their stories. This was undoubtedly, one of the most successful parts of the day, and it was difficult to interrupt the conversations to reconvene after lunch! I had an opportunity to speak briefly again, and demonstrated our website, what is available, the discussion forums, and how you would post on the forums. I also encouraged people to call/email the support line if they have any queries, and confirmed that we are a nationwide charity. We had a range of products and publications with us and folk were encouraged to visit the stand and avail of whatever would be useful to them.
After lunch, we had 2 breakout sessions. These were excellent and valuable contributions were made by all those attending.The feedback from the carers was that they found this a great release and were able to get a lot off their chests without "hurting" their loved ones. The patient session was split into 2 groups, with nursing input in both. We discussed issues surrounding their diagnosis, and offered simple suggestions as to how to take things forward.
The feedback from the day from those who attended was that it was a very worthwhile time spent, and many commented on the fact that they enjoyed the day, and having a break from the normal constraints of coping with a debilitating disease.
If you have pancreatic cancer questions and are looking for support, whether you're a patient, carer, family member or friend, our Support Line team are here to help.