A Summary of the event

An exciting collaboration took place on Friday 24th July, 2015 – Brighton Hospital Macmillan colorectal team worked in association with C-Side Colorectal Cancer Support group to hold an all-day event from 10am – 4.00pm at the Audrey Emerton Building, Eastern Road, Brighton BN2 5BE. Patients, carers and professionals filled the hall on an inspiring day with excellent speakers, activities and opportunities to network. There was also magnificent support from our commercial and charity partners whose exhibition stands were a great attraction. It was a free event, with refreshments and lunch provided, but by invitation only.

The aim for the day was to help bowel and anal cancer patients to help themselves once treatment was finished. There were four objectives for the day which were well covered. We wanted:

  • to show patients and professionals working together on a joint presentation;
  • to provide a day of information, encouragement and advice that patients could consider in order to help them “move on” and “live well”;
  • to provide opportunities to involve delegates in physical activities, should they wish to do so;
  • to provide a model for future events.

What was special about this event was the unique collaboration between professionals and patients. Denise Savage from C-Side hosted the event and worked with Gill Hilton and Sarah Back, the two Brighton Macmillan Colorectal Nurse Specialists to present a lively programme of speakers and activities.

The conference was opened by Matthew Kershaw, Chief Executive of Brighton and Sussex University Hospital, who gave the conference his full seal of approval, adding that he wished he could stay, but pressures of work did not allow for this.

Following our keynote speaker, Michaela Rossman and Kristina Parkinson spoke for Macmillan. Michaela manages the Direct Volunteering Services for Macmillan in Sussex, and Kristina is the Macmillan Development Manager for Sussex. Both spoke ably about what is available locally to support patients and carers such as Team Up and the Brighton Buddy Scheme.

Following this, another C-Side member, Ernie Milner worked with Duncan Gilbert, a Clinical Oncologist on a question and answer presentation. Duncan is also Honorary Senior Lecturer and the Multi-disciplinary Team Leader for colorectal cancer in the Brighton Hospitals. Sitting in armchairs, Ernie asked the sorts of questions that any cancer patient might wish to ask about their aftercare following surgery and treatment. This generated plenty of lively questions from the audience which Duncan could answer with authority. What came over clearly is the will to streamline administration with the appointment of Claire Theobald as the Macmillan team’s new Administrative Officer, and to ensure that patients know what will happen in the months and years following treatment.

Erika Adler who is a C-Side member and has a long history in catering and cookery education introduced our next speaker who was Mhairi Donald, a specialist cancer dietician who explained what we should and shouldn’t eat. Mhairi’s popular talk was punctuated with humour and generated several questions from the audience. Her book “Every Mouthful Counts” was on sale at the C-Side exhibition stand and sold really well.

Gill Hilton then returned to the presenters’ platform to explain what we can now expect from Primary Care in bowel and anal cancer treatment. She explained how GPs are being kept in the information loop and how we can urge them to ensure they expedite up-to-date information.

Just before lunch the energetic Julie Nye, a former GP who believes strongly in the power of singing to assist in recuperation, amazed us all by getting the audience to sing as a four-part jazz quartet!

Unfortunately a heavy rain storm prevented the planned “Healthy Walk” along Brighton seafront from taking place, but Corinna from Healthy Walks explained the scheme and we managed to get some entertaining and impromptu exercise from Siobhan Meaker and her colleague. Siobhan, from Albion in the Community, was scheduled to speak later in the day.

Lunch was arranged in two sittings to cater for the large number of people who attended the event. Delegates had an opportunity therefore during the lunch break to mix, to explore the range of exhibition stands and to view the art exhibition that had been provided by the “Cancer Landscapes” team. The art work included paintings by a professional artist – Michel Petrone – whose book “The Emotional Cancer Journey” was for sale on the C-Side exhibition stand. Also on view were paintings by non-professional artists who had had cancer and who expressed their experiences in visual form often with impressive and disturbing effect.

After lunch we came to the part of the programme that dealt with the emotional issues that often confront bowel and anal cancer patients and their carers. This is perhaps an area that we are least prepared for and Hazel Ainsley explained not only how common emotional issues were following treatment but where help was available. Hazel used to be the Senior College Counsellor and a staff trainer at City College Brighton for over 25 years, and now volunteers at the Sussex Cancer Centre, working with Laura Pritchard, the Macmillan Nurse Therapist. Hazel’s presentation on “Head and Heart” proved really interesting and inspiring.

There followed the C-Side presentation which had been prepared by Ernie Milner believing it to be more effective than getting all our members on stage to talk about “The Value of Support Groups”, Ernie had assembled an 18 minute sound and visual presentation following hours of audio recording (which required careful and intelligent editing) and a range of photographs from so many members that it is impossible to name them all! Both patients and carers were represented and the effect provided a comprehensive picture of the different members’ views on how C-Side in particular had helped them and continues to help them through difficult times. Comments from delegates showed that they found it both effective and moving, and C-Side is likely to recruit some new members as a result!

We then welcomed the return of Siobhan Meaker from Albion in the Community. Brighton is very fortunate to have the Brighton and Hove Albion Amex Stadium nearby and Siobhan is testament to their commitment to involve the community in physical activity. Siobhan has the makings of a first rate stand-up comic as her presentation was lively and entertaining. She told us particularly about the new AITC Brighter Outlook initiative which is starting up soon to get people moving and tailoring activities to their abilities.

Throughout the day, we had reminded people to complete our evaluation form, and to enter our end of day raffle. We were very lucky that Sherree Fagge, the Chief Nurse at the Brighton and Sussex University Hospitals closed our conference and drew the raffle. In her closing speech Sherree praised the collaboration between professionals and patients and explained that she was responsible for over 3,000 nurses. We were fortunate to have her speaking with such a busy schedule and know that messages of our conference will be circulated further.

The entire day was videoed. While it would be great to hear the 4-part jazz quartet singing, there will also be further developments after this day. Our 4th objective: “to provide a model for future events” will take place once the video has been edited. Gill, Sarah and their team intend to put on a series of smaller sessions on single themes, such as Diet, Physical Exercise, Emotional Wellbeing or other topics. Each presentation at today’s conference could form the basis of such a session and have a ripple effect in the future.

We would like to thank Macmillan for their generous grant towards this event and to the Saltdean and Rottingdean Lions who contributed towards the raffle prizes and other sundry expenses.

The conference could not have taken place without the help of our commercial and charity partners who were all represented today:

Biokult; Coloplast; iMedicare; Dansac; Salts; Penlan Medical; Macmillan; Albion in the Community; Beating Bowel Cancer; BSUH Family History Service; Saltdean and Rottingdean Lions; Look Good, Feel Better; BSUH Stoma care Service; PRDA; July Nye; Carers Centre

Thanks were also due to all the speakers; to the Moving On – Living Well Committee who had spent at least 6 months in preparation for this conference; to the marvellously helpful folk at the Audrey Emerton Building and especially to Gill Hilton and Sarah Back and their team who had worked so closely with C-Side in the preparation and presentation of this ground-breaking event.

Denise Savage
August, 2015