Macmillan Cancer Support
Macmillan Cancer Support has supported the Group from the outset initially with start-up funding and in 2017 the Group was been awarded with a "Supporting You to Help Others" grant. This money will help to publicise the work the group does and reach out to support more people, their family and friends, living with prostate cancer.
For more information about Macmillan go Here
There are Macmillan Cancer Information and Support Services at a number of drop-in centres at hospitals around our local area. You will find a list on the Living Well with and Beyond Cancer web-page.
Need to talk? The Macmillan help-line is 0808 808 00 00. It is open 7 days a week, 8am-8pm
Research, Macmillan 2018-2019
In late 2018 Macmillan issued a Research Questionnaire to Hospital Trusts and Macmillan staff to identify the information and support needs of cancer patients who were going through the cancerjourney. GPs were consulted as well as Haywards Heath & District Prostate Cancer SupportGroup. The questionnaire asked about diet, exercise, emotional well being and peer support. Asmany people as possible were asked to complete the questionnaire including those who attendedcancer clinics. This enabled gaps in service to be identified which Macmillan and others in NHScould help with in the community. They have since been working with Healthcare co-ordinatingthe results of the questionnaire.
Feedback was also received from patients and professionals at Princess Royal Hospital and RoyalSussex University Trust Hospital in order to ascertain how they could help, not just working ontheir own but working with the NHS and Partners in the community.
Patient feedback: 68 surveys were completed. A lot of the surveys were completed duringconversations and the level of detail gleaned was really valuable. The majority of people whoresponded were undergoing treatment. This included urology and prostate cancer, kidney, andbladder cancer patients.
The information received showed main areas of concern were Information Support and SideEffects of treatment.
It was confirmed that people do want to return to work in some capacity after treatment.
Spirituality was identified, sitting alongside Emotional and Psychological support needs whichcould be improved in the area. Specific information needed about cancer sites, Financial support,Benefits, Exercise and Physical Activity. Understanding how exercise can help and support withoutcomes was also important.
How would people prefer to receive the information and when is it most useful to get the information?
Patients would like to receive this information in various ways.
Leaflets; Conversation, or Online access.
Macmillan’s conclusion was that they need to be providing information and making it accessiblein different formats.
In terms of when this information should be offered, people felt the most useful time to receive theinformation is when being diagnosed or when undergoing treatment. Checking on what people’sneeds are as they go through their treatment was felt to be very important. This aligns withMacmillan’s understanding of what patients nationally have advised in that point of diagnosis isvery important and when they want their relationship with Macmillan to begin.
Where do People currently access information?
According to the majority of people, it seems information is usually accessed in a healthcaresetting at Princess Royal Hospital or Brighton and this is the most appropriate time. Also peoplelike to access information in their home and in the GP surgery.
People were asked what service would be important to them that they do not access at the moment. Top services identified were., Counselling, Emotional and Psychological support,Financial support and advice, Complementary therapy particularly in connection with challenges of treatment eg. Acupuncture, reflexology, massage for relaxation, yoga. It was confirmed that apatient would speak to the clinical nurse specialist or consultant to see which treatment(s) couldbe beneficial.
Professionals, Nurse Specialists and Dieticians said what they need is more training andinformation on is what’s available in the local area and where to direct patients to. This will beincluded in Macmillan’s action plan.
Macmillan currently have an established team at PRH but don’t have a huge presence of volunteers on site to help patients access information in absence of specialist nurses. Macmillan are currently developing volunteer roles, trained by Macmillan and hospital, to be onsite particularly in chemotherapy, urology and main reception.
The Cedar Room (manned by volunteers) is a valuable resource - but is not always accessible as is used by others for counselling.
Directions to Cedar Room: Situated on Ground floor - into Reception past the Cafe, turnleft and left again into Main Outpatients Dept. Just past reception on the right is the door tothe Cedar Room. There is an information stand outside the door. Directions and informationpoints are to be placed in Urology, Chemotherapy etc. If the Cedar Room isn’t in use the doorshould be open.
It was confirmed that Macmillan are committed to running and funding the Brighton Horizon Centre themselves.