NORTH BRISTOL NHS TRUST PROSTATE CANCER LIVING WELL PROGRAMME 23 MARCH 2015 As part of our focused work on cancer services in Bristol, Healthwatch Bristol attended the North Bristol NHS Trust Prostate Cancer Living Well Day to hear from cancer service users about their experiences of services in Bristol.

NORTH BRISTOL NHS TRUST PROSTATE CANCER LIVING WELL PROGRAMME

“THE PLUG GOT PULLED AFTER I LEFT HOSPITAL”

North Bristol NHS Trust held a Prostate Cancer Living Well Day for people who are in treatment for or who have received treatment for prostate cancer to attend and learn about support available to them following their treatment. The Prostate Cancer Living Well Day was developed by North Bristol NHS Trust to address the problem of a drop off in support given to people after they end active treatment for cancer. The support needed after active treatment, was summarised by one speaker as falling into 5 ‘survivorship factors’ which are:  Physical  Functional  Emotional  Psychological  Financial To address issues related to the Survivorship Factors, the event included talks from medical staff about:  Diet  Erectile function  PSA and prostate health

Speaking about his experience of cancer treatment, an attendee on the Prostate Living Well Day describes how support diminishes after the end of active cancer treatment.

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 Physical activity  Continence and pelvic floor exercise  Living Well course (a course aimed at helping men after prostate cancer treatment) There were also talks about:  Macmillan Wellbeing Centre (which offers services including 1:1 support sessions, counselling and financial support; please see the end of this report for the contact details for the Macmillan Wellbeing Centre)  Prospect support group (support services for men who have or have had prostate cancer)  Healthwatch Bristol (opportunities to share feedback and influence development of services) The event was also an opportunity for patients to share their stories and experiences:  One man who has had treatment for prostate cancer and has attended the Living Well Course gave a talk to the group about his experience. He said that receiving cancer treatment was like learning a “different language” and entering a “different world”. He said that the Macmillan and North Bristol NHS Trust (NBT) Living Well course “helped me to look at my life and get it back on track”.  Other attendees shared their feedback with Healthwatch in a short group discussion and on a one-to-one basis during the breaks between talks. Their feedback is summarised in this report. The day was attended by over 70 people. Most of the attendees were male.

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You Said….. Key Messages:  Communication: professionals need to communicate more effectively with patients and their families. They need to explain why tests are being carried out, what the results mean, what the treatment options are and what will happen after treatment.  Post-treatment support: after active treatment (for example surgery, chemotherapy, radiotherapy) has ended, people need more support to return to their lives and adjust to the changes (both physical and emotional) that the cancer has caused. Group feedback: Healthwatch asked the group of over 70 people to state the key areas of cancer treatment that need to be improved. They said:  Communication between doctors and patients – ensuring accurate and consistent information is given  Doctors’ attitudes when they ‘break the news’ that someone has cancer – doctors need to be empathetic and understand the impact the news will have on the person  Communication between hospitals and GPs – hospital teams should involve the GP in the treatment and keep them updated  Better administration – let patients know if their appointment has been cancelled before they turn up!  More post-treatment/ post-discharge support  Communication between NHS teams and private hospitals – several people had been referred to private hospitals for their surgery, but felt that this had left them isolated from other support services, for example counselling.  The problems with parking at Southmead hospital make it difficult for patients to attend appointments and adds to the stress of treatment. It

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also deters people from staying for longer courses or sessions at the Macmillan Wellbeing Centre.  The group were also keen to stress that on the whole clinical and nursing staff are brilliant! Individual’s stories: Commentator 1: The commentator attended a urology appointment in October 2013 and was told he had blood in his urine and needed an operation to remove stones. He was promised the operation would take place in 4 weeks, but was not given an operation until March 2014 (a five month wait). Following the operation, the commentator could not pass urine and had to have a catheter fitted. He reports being in agony and contacting Southmead hospital for help. He was told by the hospital staff to keep drinking water and that someone would contact him to arrange to remove the catheter – no one contacted him. After the operation in March, he had been promised a follow up appointment in 8 weeks’ time, but he did not receive an appointment letter. The commentator chased the hospital and booked an appointment. During this follow up appointment, he was told that his prostate was “shot” and he needed another operation. The commentator cancelled the holiday he had booked so that he could have the operation on his prostate; however, on the day of the operation, it was cancelled as the hospital staff identified that he had a heart problem and so the operation could not be done on that day. The commentator had the operation at a later date and in July 2014 received a letter saying that he no longer had prostate cancer. In November 2014, however, he received a second letter saying that he did still have prostate cancer. Commentator went to see GP who was able to clarify that he did not have cancer, but still needed checkups to monitor his PSA levels. Commentator feels that the communication from the Southmead hospital is awful and he feels let down by them. Commentator 2: The commentator received treatment for prostate cancer. He still has incontinence following the treatment, but states that he gets no help from doctors.

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Commentator 3: The commentator received treatment for bladder cancer at a Bristol based private hospital (after being referred there by North Bristol NHS trust). The commentator describes the operation at the private hospital as “going wrong” and resulting in him having to have a second operation at Southmead Hospital. During the second operation, which the commentator was told was to treat the bladder cancer, the surgeons removed the commentator’s prostate. The commentator says that prior to the operation he had not been told that he had prostate cancer and had not given consent for his prostate to be removed. The commentator is upset that his choice was taken away from him. He also says that no one has properly explained to him what happened or offered him any counselling. Commentator 4: The commentator is a carer for his wife and has recently received cancer treatment. He asks for services to be more aware that people receiving cancer treatment may also have caring responsibilities for other people. Commentator 5: The commentator had his cancer surgery delayed because of a shortage of beds at Southmead Hospital. Commentator 6: The commentator reports that the doctor made him very distressed when he told him his diagnosis of cancer and explained the treatment. The commentator says that the doctor only focused on the negatives and did not give any hope. The commentator was so distressed that a nurse had to help him calm down. Commentator 7: When describing his experience of cancer treatment, the commentator said: “the plug got pulled after I left hospital”, but said that there are many symptoms that still need addressing following the main cancer treatment.

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Commentator 8: The commentator had to wait a “long time” for a PSA test despite repeated visits to his GP and requesting a PSA test. The GP gave him antibiotics and delayed arranging a PSA test. Eventually the commentator had a PSA test and it confirmed he has prostate cancer. Commentator 9: The commentator says his experience of prostate cancer treatment has been “text book” and he has been impressed by the support. Commentator 10: The commentator had a biopsy (related to his prostate cancer) and was told he would get the results after 2 weeks. After 4 weeks he still had not received the results and had to chase them up himself. Commentator 11: The commentator said he was operated on in July 2014 and the Prostate Living Well day (March 2015) was the first time he had been told anything about exercise, fatigue, diet or other similar issues in relation to his prostate cancer and treatment. He welcomed the event. Commentator 12: The commentator attended the Bristol Royal Infirmary (BRI) for a scan (related to his prostate cancer). The staff attempted to carry out the scan, but told him they could not do it because his bladder was full and that he would have to return on another date. The commentator is, however, confused as to what happened and what will happen next and feels that this information was not given to him in a clear manner. Commentator 13: The commentator has previously received treatment for prostate cancer. He has been waiting four months for an appointment with the incontinence service at Southmead Hospital and is still waiting. He says that he is spending £80 per month on incontinence pads and that the incontinence “stops me living life” as

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he cannot, for example, even drive short distances without wetting the car seat.

Healthwatch will….. All the feedback provided by the group has been inputted to Healthwatch Bristol’s database of issues and concerns. It will be included in the Healthwatch Bristol Quarterly Report. Healthwatch will be sharing this report with Healthwatch partners including Bristol CCG, Bristol City Council, The Care Quality Commission, NHS England and Healthwatch England. The report will also be presented to the Healthwatch Bristol Advisory Group to propose further uptake of the issues identified in this report. The report will be available on the Healthwatch Bristol website (www.healthwatchbristol.co.uk) and circulated to our mailing lists via the monthly e-bulletin. Healthwatch Bristol is working with Bristol Clinical Support Unit to research people’s experiences of cancer treatment and knowledge of screening programs. The work will take place in four phases:  Phase 1 – Retrospective opinions of former cancer patients on the support services they received (a report for this phase is available on the Healthwatch Bristol website)  Phase 2 – Examining early diagnosis rates and the reasons behind inequalities  Phase 3 – Examining the factors resulting in reluctance to screen  Phase 4 – Experiences gathered from patients currently using cancer support services The feedback shared by members of the Breast Living Well Course will be included in the Phase 4 report which will be shared with the Bristol Clinical Support Unit.

Looking forward…. Plans for future work between Healthwatch Bristol and the Macmillan Wellbeing Centre Healthwatch welcomes and encourages people receiving treatment for cancer and/or attending the Macmillan Wellbeing Centre to continue to contribute

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their feedback to us using the communication methods included at the end of this report. Healthwatch also supports members of community groups to become Volunteer Champions so that they can represent the experiences and needs of their community group. If you would like to find out more about volunteering with Healthwatch, please contact us using the details below. Healthwatch Bristol will continue to visit the Macmillan Wellbeing Centre to hear from people using its range of services about their experiences.

Tell Us Your Story… Healthwatch Bristol wants to hear from you about your experiences so that we can tell services your needs to create the best local services. Text us - text bris followed by your message to 07860 021 603 email us at [email protected] Call us: 0117 2690400 Write to us at:

Healthwatch Bristol, The Care Forum, The Vassall Centre, Gill Ave, Fishponds, Bristol, BS16 2QQ

Or visit our website to see more at: www.healthwatchbristol.co.uk

Macmillan Wellbeing Centre The NGS Macmillan Wellbeing Centre at Southmead Hospital provides advice, support and information to anyone living with or after a cancer diagnosis, or anyone concerned about cancer. It opened in September with its official opening also celebrating Macmillan Cancer Support’s biggest fundraiser, The World’s Biggest Coffee Morning.

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The centre is for anyone with cancer as well as their families, friends and carers and the Project Manager and her team of 20 willing volunteers provide support by appropriately signposting visitors to the many services available in the community; to appropriate information in the extensive Macmillan leaflet library and to local support groups and services or to other health care professionals. Visitors may come for a specific reason or sometimes just for a social visit and a cup of tea with an opportunity to meet other people in a similar position and enjoy the welcoming non-clinical atmosphere, with comfortable chairs and access to both private and communal spaces. The centre hosts the Bristol Macmillan Citizen’s Advice Service three times weekly, plus a dietician clinic and carers support sessions. We have also just started a weekly timetable of activities including mindfulness, relaxation, walking groups and (from February) complementary therapies. The Hospital’s Living Well days and courses are run from the centre in the specially equipped resource room which is also being used as a base for local cancer support groups. This is a joint venture between North Bristol NHS Trust and Macmillan Cancer Support and the centre is named in recognition of the support that Macmillan receives from the National Gardens scheme. Anyone is welcome to just drop in to find out what’s available; there is no need for an appointment. The centre is open Monday to Friday 9:30am til 4:30pm. Contact details for the Macmillan Cancer Support Team: Macmillan Wellbeing Centre Beaufort House Southmead Hospital Bristol BS10 5NB T: 0117 414 7058 M: 07809320514 E: [email protected]

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