You Said, We Did. Healthwatch Bristol Engagement Report Teenage and Young Adult Unit, Bristol. (3 February 2015) Report Author: Ellen Devine, Healthwatch Bristol Development Officer. Contact: ellendevine@thecareforum.org.uk Contact at Teenage and Young Adult Unit: Vicky Britton, Victoria.Britton@UHBristol.nhs.uk Contents of Engagement Summary: Section 1: Details of the project Section 2: Summary of feedback Section 3: Healthwatch Next Steps Section 4: Healthwatch Contact Details Section 1: Details of the group. Healthwatch Bristol visited the Teenage and Young Adult Unit at Bristol Haematology and Oncology Centre to speak to young people who are patients on the ward and received cancer treatment, about their experiences of the support they have received both in hospital and in the community. Six people contributed to the feedback within this engagement summary: three of whom were young people who are inpatients on the ward; two of whom were family members or friends; one of whom was a youth worker at the hospital. Section 2: Summary of feedback Group feedback: What is your experience of asking for or receiving emotional support alongside your cancer treatment? All the group said that the emotional support on the unit has been really good. Two young people shared that they had specifically asked to be treated in Bristol because they felt the environment of the ward was better than in other hospitals. 1
The group praised their social worker (Suzie) from CLIC Sargent and said she offered them excellent support with tasks such as filling out forms or putting them in contact with other support services or groups. What do you value most about your treatment? The fact it s curing my cancer! The TYA Unit:! ; it s big and open ; good design ; set up to be social Meeting and socialising with other people provides company and you get support from other patients and staff. What services would you like to receive after you finish treatment? Physiotherapy. Having a contact number for the ward to get in touch with if we have any concerns. Individual feedback: Commentator 1: Is receiving treatment for cancer at Bristol Haematology and Oncology Centre. Reported that his GP surgery, is useless. He described a home visit he received from a district nurse who he said was a blithering idiot. The district nurse did not know how to use his lumen to take blood and the commentator had to adjust the lumen to stop it letting his blood out. The commentator said he felt scared that the district nurse s poor treatment would result in him getting an infection and has refused to see that district nurse. There is poor communication between GPs, district nurses and patients and that this often results in the district nurse not bringing the correct equipment on home visits. Was diagnosed after falling off his skateboard and going to A&E at Swindon. The staff who told him it was cancer were very frank and honest and commentator appreciated that approach. Was an inpatient in Oxford at the start of his treatment and reported that he repeatedly asked to move to Bristol, but was told he was not allowed to. Then, after weeks of asking, he was told he could move. Commentator said it is important to consider the location of the treatment based on where is easiest for the patient to travel to and what the most appropriate setting is. Commentator 2: Is receiving treatment for cancer at Bristol Haematology and Oncology Centre. Lives in Weston-Super-Mare Has never been offered support in the community and would not know where to go to access community based support 2
His diagnosis experience was good: the GP took blood and contacted him when the blood results arrived and sent him straight to the BRI where they diagnosed him. Commentator 3: Commentator s boyfriend is receiving treatment for cancer at Bristol Haematology and Oncology Centre; commentator lives in Wiltshire Was always told that emotional support is available for family as well as the patient and was given a MacMillan information booklet. Commentator 4: Is a youth worker at the hospital Reported that patients often say they are not accepting emotional support alongside their cancer treatment, but that they have been offered it. She said that staff provide emotional support in less obvious ways than one-to-one talking sessions, for example social groups, games, art activities. Commentator 5: Is receiving treatment for cancer at Bristol Haematology and Oncology Centre Reported a poor experience of initially being told she had cancer at her local hospital. The staff were very blunt and there was no preparation for the news. Commentator s mother also felt this way. Following being told the diagnosis, the commentator and her mother were left in a room in the hospital and not given any support. The commentator chose to have her treatment in Bristol because she liked the atmosphere on the ward. Section 3: Healthwatch Next Steps 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 Quarter Four Report. Healthwatch will be sharing this quarter report with Healthwatch partners including Bristol CCG, Bristol City Council, The Care Quality Commission, NHS England and Healthwatch England. The quarter report will also be presented to the Healthwatch Bristol Advisory Group to propose further uptake of the issues identified in this report. The quarter report will be available on the Healthwatch Bristol website (www.healthwatchbristol.co.uk) and circulated to our mailing lists via the monthly e-bulletin. This engagement summary will be included in Healthwatch Bristol s focused report on cancer services which will contribute to the Bristol Clinical Commissioning Group and Support Unit s research into cancer services in Bristol. Where appropriate, feedback specific to services outside of Bristol or shared by service users living outside of Bristol, will be shared with other local Healthwatch including Healthwatch North Somerset, Healthwatch Wiltshire and Healthwatch Swindon. 3
Section 4: Plans for future work between Healthwatch Bristol and the Teenage Cancer Trust. Healthwatch welcomes and encourages people having treatment on the Teenage and Young Adult Unit to continue to contribute their feedback to us using the communication methods included at the end of this report and/ or to invite Healthwatch Bristol to any future groups or events. 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 anyone having treatment on the Teenage and Young Adult Unitwould like to find out more about volunteering with Healthwatch, they can contact us using the details below. Healthwatch Bristol also welcome young people at the Bristol Haematology and Oncology Centre to write a blog for the Our Stories blog page: https://healthwatchbristol.wordpress.com/ Section 5: Contact Details for Healthwatch. We want 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 info@healthwatchbristol.co.uk 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 4
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