Clatterbridge Cancer Centre Listening Event Report - September 2023

On Thursday 14 September 2023 Healthwatch Liverpool held a Listening Event at Clatterbridge Cancer Centre in Liverpool. We spoke with patients, family members and staff and listened to what they had to say about their experiences.

Four members of Healthwatch Liverpool staff took part in the event. We spoke with people in various areas across the building and made them aware that there was no obligation to speak with us and that everything they told us was voluntary and anonymous (unless safeguarding issues were raised that we were required to share with staff). Given the nature of people’s treatment, not all patients or family members were willing or able to speak with us and we used our judgement about who to approach, as well as checking with staff on wards about whether anyone was too unwell to speak to us.

14 surveys were completed with patients. Family members also provided additional feedback in some cases. 

This report details all the feedback gathered on the day, and also includes our own comments and observations.

Comments, Questions and Recommendations (with responses)

Following our visit we drew up the following list of questions, comments and recommendations which we shared with Clatterbridge Cancer Centre. Thanks to them for their thorough responses which we’ve included below in bold type.

1. We were pleased to see that Healthwatch Liverpool information was available on screens on the day of our visit. We would welcome discussions on how we could include information about ways to contact us as part of the regular information seen by patients on a daily basis. We already have QR codes and contact information on display at other local hospital Trusts which generates regular patient feedback that we can then share with the Trust. 

   We would welcome the opportunity to share QR codes on our internal communication screens for patients and carers to feedback directly to Healthwatch.

2. We were not clear about how patients waiting in e.g. Radiology are called into their appointments if they are unable to see or read the information screens. Further information about this would be appreciated.

   The Clatterbridge Cancer Centre has processes in place to support patients who require additional support with communication. Individual alerts are available on the electronic patient record to inform staff of any specific support required. In addition staff members will call patients by name if they are unable to see the screens and our community of volunteers provide additional support to patients where required upon arrival to the hospital. 

3. We would be interested to know whether patients are provided with an information pack at the start of their treatment including where/how to access support around issues including financial worries, relationship worries, mental wellbeing and physical health. We think this would be useful for patients/partners/family members if it does not already exist. We believe that all patients are made aware of Macmillan and Maggie’s services but are they also aware of Sunflowers and services such as the Live Well Directory?

   During a patient’s first appointment information specific to the clinical team they are meeting is provided to patients, whilst being mindful to not overload individuals with information at that stage. 

   A Holistic Needs Assessment (HNA) is a tool which can highlight any potential concerns patients may have concerning their finances, relationships, mental wellbeing and physical health where appropriate signposting occurs. Currently these assessments do not capture all patients but work is being undertaken to improve the offer and uptake of Health Needs Assessments of patients. Information on how to access the Macmillan Cancer Information Centre and Welfare Benefits Advice Service is shared at The Trust Induction Programme, with awareness sessions being held for Cancer Support Workers and Clinical Nurse Specialists about these services. 

4. We would also like to know whether named staff undertake regular follow-up ‘check-ins’ with patients throughout their treatment about whether they have any questions, would benefit from additional advice or support or are having difficulty coping with their situation. Even if this information is provided at the start of treatment it may not necessarily have been remembered or understood when patients/partners/family members have been dealing with life-changing news.

   Patients undergoing cancer treatment have regular treatment reviews with a member of the clinical team, where any additional advice or support is provided. In addition we have three cancer information and support centres at Clatterbridge Liverpool, Clatterbridge Aintree and Clatterbridge Wirral. These services offer support to patients, carers, family members and friends, providing information and support around living with and beyond cancer. If any specific issues are raised to the Cancer Information and Support Service Team, these would be escalated to the relevant clinical team with consent.

5. Digital communication with patients generally appears to be working well but we are interested to know more about how the Trust addresses the potential digital exclusion of e.g. older patients, those who do not have good English language skills, or those with sensory impairments. We heard evidence that the Trust uses multiple methods of communication but that relying on postal communication can sometimes lead to unnecessary delays or missed appointments. 

   Patients are provided with the option to ‘opt out’ of electronic correspondence. The Cancer Information and Support Service Team, can assist patients with this as can other members of the wider hospital team – volunteers, administrative staff etc. In addition, if the electronic link sent to a patient via digital communication, hasn’t been accessed within a set time frame, the information is sent to the patients in a paper letter. Where appointments are time sensitive, patients are contacted by telephone with the details. The electronic patient record in addition highlights any specific requirements which may assist patients for example, such as requiring documents in large print or in an alternative language. 

6. We would welcome information about how Clatterbridge Cancer Centre works to support neurodivergent patients and makes them welcome within the hospital environment.

   We provide individualised/personalised care to patients. Therefore all patients are provided with support based on their individual requirements. In addition we have a dedicated additional needs practitioner working for the organisation, who is available to provide support to patients and their carers/families whilst in the hospital.  Our electronic patient record contains an additional needs assessment supporting the provision of reasonable adjustments for patients and we encourage the use of the hospital passport in addition. All clinical staff undertake the Oliver McGowen training programme as a part of mandatory training requirements. 

7. We would also be interested in how the Trust works to provide trauma-informed care to support patients whose past experience of e.g. sexual violence may make intimate care or examinations particularly difficult. 

   Care would start at a patients initial assessment with staff being aware that advice can be sought from the organisations safeguarding lead to provide advice and support to patients and staff. Level 3 safeguarding training provision encompasses caring for people whom have experienced trauma in their lives. Level 1 safeguarding training provides basic advice to enable all staff to signpost patients to the appropriate support available within the organisation.  In addition the Integrated Care Board have facilitated training about trauma informed care which was open to all staff. 

8. A common cause of confusion for patients and other hospital visitors was the numbering of the hospital’s floor levels. We understand that the floors were numbered to match the floors of the neighbouring Royal Liverpool University Hospital and for ease of patient transfer between the two Hospital Trusts. Whilst it may not be possible to re-number the floors, some additional explanation may help. We recognise that efforts have been made to give each floor a clear identity and that patients learn to navigate the building over time, but any additional information that can be provided to assist patients would be helpful. 

   We acknowledge that the floor numbering system is not intuitive when the Clatterbridge Centre is viewed in isolation. The floor levels are named to correspond with the floor levels in the Royal Liverpool University Hospital next door. This system supports the transfer of patients between our hospitals as well as our processes to respond in the event of an emergency. We based our wayfinding system on location numbers rather than floor levels to try to lessen confusion as far as possible. Additional signage has recently been installed across the Clatterbridge Liverpool site, with a large monolith now in place in the main reception area to assist patients and visitors with moving around the hospital. In addition, our community of volunteers in the main reception area, welcome and support/escort patients to their destination if required. 

9. We would be interested to know what consideration has been given to improved usage of the lifts so that people spend minimal time waiting, and to reduce the need to share the confined space with others when they are immuno-suppressed.

   There are 3 passenger lifts available to members of the public, in addition to the main stairs. We also have 2 bed lifts, a facilities management lift and a staff only lift and these are designed to keep the passenger lifts as free as possible for patients and visitors. Even so, at busy times there might be a short wait for the passenger lifts. All patients, staff and visitors have an option of wearing a mask and these are readily available at the main reception area near to the lifts at Clatterbridge Liverpool. If patients require reasonable adjustments to be made for their visit, requiring a larger lift or being around less people for example, then staff will support patients so this is achieved. 

10. We were interested that 50% of the people we spoke to said they did not have a disability. We were not clear whether they realised that cancer counts as a disability and entitles them to certain benefits e.g. Personal Independence Payments (PIP) or whether they did realise this but did not want to label themselves as disabled. We would, however, recommend that further information should be provided to patients about this early in their treatment so that they are able to claim any benefits which may help them to cope with changes to their financial situation and/or daily life. This may also be beneficial to people who are currently paying considerable sums for taxis to and from the hospital. 

    Due to recent expansion of the Macmillan Welfare Benefits Service provision, the team are able to support patients at their point of need. Access to the service has expanded by having Macmillan welfare benefits advisors available across the three main Clatterbridge sites in all of the Cancer Information Centres. In addition the cancer information and support service staff have undergone basic welfare benefits training in order to support patients when they utilise the drop in service operated by the team, referring on for more detailed advice and support as required. The Cancer Information Centre, including the welfare benefits service is introduced to all staff as a part of the Clatterbridge Cancer Centres, Trust induction programme and can be accessed by any patient who is undergoing treatment at The Clatterbridge Cancer Centre, irrespective of how individuals define themselves. Patients are made aware that is not the label of cancer which entitles them to certain benefits, but the wider impact of living with cancer has on their health and wellbeing.