Telford CCG Cancer Strategy Engagement Event. Summary of findings April 2018

Transcription

1 Telford CCG Cancer Strategy Engagement Event Summary of findings April 2018

2 Event aims and structure Aims of the event were to: Enable participants to understand why a Collaborative Cancer Strategy is being developed, what it is and how to contribute Share and improve understanding and experiences at all stages of the cancer pathway Jointly agree what is working well across the local cancer pathway, what improvements are needed and what priorities for improvement are The event was structured to allow attendees the maximum opportunity to share their views and interact with others In total, 61 people attended the event of whom 42 completed a participant survey. Participants were split amongst seven tables, each table was headed by a facilitator who helped progress the discussion, ensure attendees remained on topic and complete all required tasks The facilitator was also responsible for capturing the key thoughts and views shared on their tables in their facilitator work pack. These work packs were then collected and the key findings summarised in this report MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 2

3 Attendee demographics

4 Respondent type Service user - a current or former cancer service user 30% Other public sector employee 22% Carer - a current or former cancer carer 19% Public - member of the public 16% Any other organisation employee NHS employee (mental health) Other 11% 11% 14% Other Cancer foundation trustee support Volunteer RSH oncology RSH lead oncology volunteer Healthwatch & carer Base: 37 (those providing a response) MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 4

5 Demographics Postcode 2 attendees were from TF attendees were from TF TF1 TF2 TF3 TF4 TF5 TF6 TF9 TF10 TF11 SY1 SY3 SY4 SY5 WV15 WV16 Base: 31 (those providing a response) MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 5

6 Demographics Age 17% 15% 15% 12% 10% 7% 7% 5% 5% 2% 2% 2% 0% 0% 0% 0% Base: 41 (those providing a response) MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 6

7 Demographics Gender All attendees identify as the same gender as when they were born 17% 83% Base: 40 to 41 (those providing a response) MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 7

8 Demographics Ethnicity British 88% White and Black Caribbean 3% White and Asian 3% Indian 3% Thai 3% Any other ethnic or nationality background 3% Other Anglo, Celtic, Austro, Hungarian Base: 40 (those providing a response) MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 8

9 Demographics Carers 82% Are not a carer for anyone who has accessed/ is accessing cancer services 18% Carer for somebody aged over 50 years Base: 34 (those providing a response) MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 9

10 Demographics Sexual orientation & relationship status Sexual orientation Sexual orientation Married 66% 98% Identify themselves as Heterosexual Divorced Widowed 10% 10% 2% Preferred not to respond Base: 41 (those providing a response) Single Seperated Prefer not to say 2% 7% 5% MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 10

11 Demographics Religion/ belief 68% 20% 3% 3% 5% 3% Christianity Buddhism Sikhism Other No religion Prefer not to say Base: 40 (those providing a response) MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 11

12 Demographics Those considering themselves to have a disability 54% Physical impairment 54% Long term illness 23% Sensory impairment 8% - Mental health need 8% - Other disability Base: 13 (those providing a response) MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 12

13 Preventing cancer and achieving early diagnosis

14 What s working well and good experiences National campaigns with clear messages - remove the shame factor. As well as methods to increase/ promote cancer screening; o o o o Awareness raising and promotion of breast cancer screening attendees feel this requires a bigger push "Be Clear on Cancer" campaign recalled, however there was a perceived lack of awareness amongst local population Engagement with local GPs to increase screening uptake Peer messaging belief that individuals are more likely to listen to people closer to them (e.g. family, friends, colleagues, etc.) Availability of appointments for breast screening Reduction in smokers through legislation, taxes and campaigns Guidance around two week referrals is mentioned as an aspect that is working well Implementation of community programmes o o Healthy Families Outdoor equipment to encourage residents to be more active/ exercise It is reported that, generally, people aren t aware of where they can obtain information on the signs and symptoms of cancer MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 14

15 Key things that must to be kept The following were mentioned during the event as key aspects which must be kept; Awareness of symptoms de-mystify the symptoms Screening programmes Continued healthy advice up to treatment Be Clear on Cancer campaign Accurate diagnostic tests Safety netting for low risk symptoms Information points Awareness raising in schools - cancer risk prevention MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 15

16 What s not working well, issues, concerns, bad experiences Difficulty getting an appointment with a GP o o o Receptionists acting as gate keepers / asking for patients to outline their reasons Lengthy delays in obtaining appointments Patients not making appointments due to lack of time or embarrassment Lack of awareness of cancer services and screening programmes Lack of awareness and knowledge around self examination Feeling that the media tends to focus on the process following diagnosis Bland, unengaging literature around cancer screening Fear screening tests diagnoses, e.g. bowel cancer Difficulty getting through triage when using Teldoc Concerns around GP workload, and ensuring they are not over worked Being taken seriously and fear factor amongst some to challenge staff to see a healthcare professional Ageism and the apprehension around young and older patients being treated differently MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 16

17 Key improvements that should be made Advertising/ messaging Screening Support Consistent messages around symptoms Greater communication with seldom heard communities Co-ordinated local campaigns, e.g. local stories, health champions, patient advocates Use of pester power, as per stop smoking campaigns Use of social media to share messages Targeted campaigns for teens and those in their thirties GP endorsement of screening letters GPs should chase those who do not attend their screening appointments User friendly instructions/ information around screening Availability of a greater range of tests Improving awareness to overcome embarrassment Reducing the delay in providing patients with access to support services Legislation around certain items such as salt and sugar Requirement for GPs to be holistic and open minded MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 17

18 Top things to keep and improve Top things to keep Tailor national campaigns around screening campaigns to a local level to increase uptake Ensuring screening programmes are in place and well promoted Awareness raising through celebrity endorsements, documentaries, patient stories, media channels, and working with schools Encouraging a healthy lifestyle through public health messages. In particular promoting exercise for children and young adults Greater impetus on the GP - monitor progress, chase communications, problem solving Promoting stop smoking services Top things to improve GP accessibility Access to screening programmes and their promotion Engagement with disadvantaged/ seldom heard groups, e.g. those where English is not their first language Sharing positive messages around early diagnosis Simplification of the screening process Consistency in the messages communicated by organisations Awareness amongst young people Tackling obesity by working with schools to promote healthier eating and raising awareness of cancer prevention and support pathways Promotion of the local community network as source of knowledge and information Limitations on salt content and processed foods. MOT tests to promote early diagnosis and prevention MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 18

19 Treatment aftercare and end of life care

20 What s working well and good experiences Excellent staff, always available for questions and support. They also provide information and booklets o There are also volunteers that support patients during pre-assessment of chemotherapy Quality of local treatment comments around it being second to none Early diagnosis and good communication Support offered by the breast cancer team following diagnosis, where they offer booklets, and also have an app o Helpline for those receiving treatment - although more could be done to raise awareness of this Hospice at home provide a prompt service that helps prepare patients for end of life; give dignity, listen to patients and very good staff The Jayne Sargent group in Telford is considered brilliant Macmillan Cancer support - provide useful information to patients around what they could expect Surgeries offering an efficient, personalised service Access to information o o Access to information around treatment plans and progress A film has been created for patients MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 20

21 Key things that must to be kept The following were mentioned during the event as key aspects which must be kept; Staff Access to ACN s Face to face interaction with clinicians Macmillan cancer nurses Services One stop breast cancer service Hospice at home PET scans at Stoke Access to primary care has improved Improvements made by SATH around their support network Information and support Provision of good information local support and reliable websites Links to cancer services Macmillan cancer packs Access to support networks Other elements Access to life saving drugs, even if they are expensive Priority care Hospice personalised efficiency MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 21

22 What s not working well, issues, concerns, bad experiences Hospitals not having access to drugs to assist cancer patients when presenting at A&E Lack of treatment options in Shropshire resulting in patients going to London or Birmingham Poor continuity of care with patients seeing different staff at each appointment Inconsistent messaging around treatment availability and lack of awareness of cancer care reviews Lack of aftercare and communication between hospitals Requirement to travel to specialist centres seen as a negative. Parking difficulties also highlighted Lack of privacy after patients receive bad news, often having to walk through busy waiting rooms Access to information around healthy living and nutrition would be positively received Lack of support Care/ support offered by the GP in the initial appointments is lost during the pathway from diagnosis to treatment Lack of support and information leaving patients with many unanswered questions Lack of mental and emotional support available to patients Greater support required for older patients from GP surgeries and the community Need for education around long term support and a buddying/ mentoring system for patients to access for further support MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 22

23 Key improvements that should be made Greater awareness of processes and guidelines in chemo alert episodes More community based services and information Greater knowledge sharing between local care and inpatient services Information for patients around what to expect when presenting at A&E Easier communication with reception staff Education/ awareness raising around breast screening age limits Clear, consistent information about support services Greater access to support services Ensure written materials are kept up to date Reduction in parking costs MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 23

24 Top things to keep and improve Top things to keep Ability for patients to access the right information Macmillan information and support centre High standards of the breast care team Lingen Davies Centre nurses who are considered excellent Excellent clinical service and quality of treatment Service provided by Hospice for Home Diagnostic services provided by clinicians and the speed at which they can be accessed Hamar Help and Support Centre considered great but located in Shrewsbury which requires considerable travel for some. Therefore, requirement for similar local services Top things to improve Level of support provided by CNS during chemotherapy treatment Availability of appropriate treatments in A&E Education for patients around entitlements and expectations on treatments Consistency and accessibility of information for patients and carers across a range of channels The level at which hospitals are able to access patient notes Treatment/ appointment plans which patients and their families can review outside of the consultation to reduce anxiety and uncertainty Communication between different healthcare professionals during the treatment process Support for all carers, especially children, e.g. peer support, buddying, drop-in service Greater post treatment care and support for patients, e.g. peer support, social and emotional support MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 24

25 Final comments

26 Final comments about the event Lots of people are asking for the same services 'within' their closer community, we were able to put over our individual points of view on the services provided. Fantastic hearing from people with real experiences Very good information today Very informative Sounds like some variability in availability of key worker, everyone needs one. Need to make sure everyone knows who's their key worker Lots of local resources lets share and collaborate to help people with cancer. Information needs to be freely available. Enjoyed the session. A most worthwhile event a very informative sharing of knowledge and experiences - thank you. Next event - please let us know. You need a radio mike that works RSH Oncology Video unit! That we need to do much more and communicate better. What next? Good to share patients journeys. Each cancer patient requires support - not necessarily a professional but a caring supportive person. Strengthen therapy services for cancer patients across the county + close the gap between the Shropshire OT. Streamline all cancer pathways. Hamar centre in PRH. Act as a mentor/buddy. Great to meet service users and fellow healthcare professionals joined up thinking and strategy are pivotal to success in future. Getting GP's to be more involved in making patients aware of cancer services Great to hear everyone sharing ideas regarding diagnosis and treatment. Thought the best suggestion was a similar group to Hamar Centre based in Telford. Areas too wide to discuss in 10 mins. Useful event meet some interesting people, good to hear their views about cancer pathways in T&W. Access to all services across the county, more rural. Consistency across all services. Local awareness programmes needed. MIDLANDS AND LANCASHIRE COMMISSIONING SUPPORT UNIT 26

27 Thank you Dr Stephen Williams Senior Communications and Engagement Manager Involvement, Research and Insight ,