Recently the Thames Valley Cancer Alliance has been conducting cancer patient engagement events around the region. Here is the summary of our event held in December 2017…
Summary Report Patient Engagement Event, Milton Keynes University Hospital
The Thames Valley Cancer Alliance (TVCA) has funded a series of engagement events taking place across Thames Valley. The purpose of these events has been two-fold: to discuss the latest cancer patient experience survey results to consider how improvements can be made to cancer services, and secondly to introduce individuals to the Thames Valley Cancer Alliance which was established in February 2017.
The National Cancer Patient Experience Survey (CPES) is a questionnaire distributed to patients who have received cancer treatments including surgical, medical and clinical treatments. The survey aims to provide an insight into the care experienced by cancer patients across England and allows Trusts and Clinical Commissioning Groups to understand their individual performance and identify areas for local improvement. A full summary of results is publicly available online via http://www.ncpes.co.uk/index.php/reports/2016-reports/national-reports-1 where results for individual hospitals and clinical commissioning groups can also be accessed.
The event in MK: Michael Mawhinney opened the event with introductions to what the TVCA is and to provide an overview of the CPES and results for Milton Keynes University Hospital (MKUH). Across 3 tables, 3 questions were asked of attendee’s. A summary of the response to each question will be found in this report. During discussions, Lead Cancer Nurse Sally Burnie provided an update for attendee’s about the current status of the new cancer centre build and plans for radiotherapy services. Suzan St Maur then provided an overview of the role of the Milton Keynes Cancer Patient Partnership (MKCPP) and facilitated a discussion with the audience regarding some of the current challenges faced within the cancer care arena, including the roles of Macmillan, the TVCA and MKUH.
The event was attended by a mix of health professionals and individuals who had directly been affected by cancer, or whose partner had had cancer. Approximately 22 individuals inclusive of health professionals were present for the event.
Question 1: Considering recent challenges of repatriation and volume of cancer patients, how can MKUH improve cancer patient experience?
Healthcare providers, inclusive of both acute hospitals and GP services, should recognise the significant role of carers and NOK of individuals affected by cancer. Family members are a crucial support to patients both pre diagnoses, during treatments and after treatments have finished. Health professionals should recognise this role and offer more support and inclusion where possible.
Technology was viewed as a useful resource to support people with cancer and could be utilised and harnessed better. The use of an online booking system for appointments at GP practices was viewed as convenient and discussed how this could perhaps be implemented at the hospital. It was acknowledged that computer systems, and associated healthcare providers systems “do not talk to one another”. The concept of having one electronic record of care was suggested as a means to help improve communication so GP practices, hospital staff and any other appropriate health professionals could access the one record. One attendee commented, “Transfers of care include transfers of knowledge” which unfortunately was not their experience.
Good practice was recognised in paediatrics due to high standards of communication. Parents were reported to receive information about any communications that had taken place regarding their child’s case, for example, reports from a Multi-Disciplinary Team (MDT) discussion.
Several attendees reported a desire to see more visible matrons in the hospitals. It was felt a visible matron was akin to high standards of care, so this might have an impact in improving patient experience.
The idea of a “one stop shop” was welcomed. Where everything could be done at once in the one place e.g. blood tests, investigations, nurse appointments, doctor appointments. It is hoped this will be in place once the new cancer centre is built.
Distribution of contact cards to patients would be helpful. For example, a small business card that would provide the health professionals name and contact number or email addresses. It was felt that sometimes patients may be unsure of who to contact specifically, and that trying to get to the right person was often challenging. The Clinical Nurse Specialist (CNS) was viewed as hard to contact – an idea was suggested of having one phone line that was always manned by a CNS so calls could be screened and directed to the right individual in a timely fashion. A 24hour telephone advice line available to help signpost patients and carers would also be helpful.
Signposting people physically with directions around the hospital could be improved towards the multiple information points at MKUH.
Community services were discussed. GP practices would ideally be proactive rather than reactive, maintaining contact with their patients and offering support as required. There was also the view that GP surgeries should increase screening for cancers and raise the profile for encouraging increased screening uptake. Education for GPs and the general population about signs and symptoms of cancer should be encouraged. Finally, communications between GP and hospital needs to be improved.
Question 2: How can MKUH help meet capacity needs until the new cancer centre is built?
Some attendee’s commented that on discussions with clinical staff, staff viewed the cancer outpatient department as an organised chaos, however for some attendee’s their experience of the unit was one similar to a “retreat or haven”. MKUH was viewed as relatively new and modern in its design and this was viewed as a positive attribute of the hospital.
Transparency in waiting times was viewed as a positive. There was a sense that when in waiting areas, and appointments were delayed there was no idea how long the delay would be, whether this be 5 minutes or up to an hour. It was suggested volunteers could provide an update on the running time, or the delays expected to help reduce patient and families anxieties whilst waiting.
There is a lack of privacy at present within the cancer department. With few rooms for private discussion, this makes it challenging to facilitate sensitive conversations. In some cases however, if patient initiated discussions take place this isn’t a problem as some may be happy to have difficult conversations in public areas.
To assist with capacity issues, the idea of having smaller, shorter appointments was suggested rather than one long appointment.
Question 3: How can we improve information giving at MKUH?
The idea of giving information in “short bursts” was encouraged. The question of when is information given and how much information given should always be at the back of the health professionals mind to ensure it can be delivered to patients appropriately. Information giving should be timely and sensitive – “don’t give just give me a pile of leaflets” as some of these are generic and repetitive, information giving should be bespoke to the individual.
Some information should be repeated at later times, for example, when receiving a diagnosis, or bad news, it is unlikely much information will be absorbed at this time and therefore, repeated at a later date.
It was raised that there are many common frequently asked questions. This could perhaps be handled by volunteers or through peer support. It was recognised a volunteer had no role in medical advice or management, but rather could signpost and respond to some common FAQ’s. This could perhaps look like a volunteer hotline or advice service. It is often challenging for patients to identify the right number to call, or who indeed they should be trying to get in contact with. This line could facilitate that.
It was suggested that the transformation team within MKUH could consider how other departments deliver and disseminate information to patients in order to share best practice.
Communication skills were viewed as essential and attendee’s desired that all staff coming into contact with patients would have advanced communication skills. This training extended to receptionists and all professionals at the hospital, but also into primary care where contact is often had with GP receptionists, practice nurses and GP’s.
The important role of families and carers was also raised when addressing the question of information giving. These individuals should be actively included in the delivery of information, but also encouraged to seek out information through signposting to valuable resources.
Means of communicating with patients should always be maintained and up to date. Patient’s addresses and contact details might change so the hospital should have some monitoring to ensure these contact details are updated.
The important role of family members must not be underestimated. A patient’s next of kin, partner or family members should be encouraged to attend hospital appointments where possible and be involved and included at every level. Clinical nurse specialists, medical teams and all professionals involved in treatment, support and information giving should include family members in education, provision of information and provide direct emotional support to the carers, not only the patient themselves. Inclusion of an increased level of support might help ease the burden of cancer not just on the patient, but their family members and in turn, result in an improved patient experience. Resources should be equally advertised and widely available specifically for family and carers for those with cancer.
Communication was a key theme that runs through all the discussions held at this event. All professionals, whether they be a receptionist, or consultant, in a hospital setting, or primary care setting can have a huge impact on a patients experience. This should be reflected in education and training, where appropriate encouraging health professionals to attend advanced communication skills training, or customer service training if in administrative roles.
Communication should always be transparent. It was viewed as better for patients and their families to have a clear idea of what to expect in terms of delays in waiting rooms. Volunteer staff could play an enhanced role in improving patient experience through small changes to their practice to include updates on running times of clinics and expected delays. It should always be clear to patients not just an emergency number, but rather clear contact points for who to get in touch with but also how to get in touch with them. A useful suggestion for this included business cards which would provide the individuals name, number and email address. Where challenges or difficulties were discussed, it was often the case that individuals did not know who to contact to resolve a query, or how to get in touch with this individual once they had been identified.
It was recognised the overwhelming nature of information giving, especially within a context of often traumatic news or diagnoses. Information should be given steadily, in “short bursts” and repeated at future encounters as appropriate. Where information points are available these should be clearly identified, and if in several locations throughout the hospital, directions to these points clear.
Final discussions about the work of MKCPP were held describing projects within MKUH but also the larger area including work with primary care. The valuable work of Macmillan was recognised in the area and their unique position in being able to drive forward projects to improve. Finally the challenge of ensuring collaboration between the Alliance and healthcare providers such as clinical commissioning groups and hospitals was discussed.
11 event evaluations were received. Feedback was encouraging with many attendees describing the event as informative, encouraging, constructive and inclusive. All feedback forms indicate that the most enjoyable and important feature of the event was the group discussions but updates from the lead cancer nurse were informative and helpful. All evaluation forms reported that individuals had their say. For any future events it would be helpful to clarify at the beginning of the meeting who the various health professionals are in attendance, provide a key or glossary for any acronyms that might be used, and finally a request to include some shortbread to accompany the tea and coffee.
Conclusions & Recommendations
The final recommendations from this report based on discussions from the event include:
- Increased recognition of the important role of families and carers of those affected by cancer
- Clear contact details of appropriate health professionals
- Consideration of a 24 hour advice line
- Consideration of a generic CNS line that would always be answered to help improve ease in contacting a specific CNS
- Utilising the role of volunteers to assist with communicating delays and clinic running times
- Clearer signposting towards information points at MKUH
- Consider how to minimise information overload and distribute timely, sensitive, bespoke information to patients
The Milton Keynes Cancer Patient Partnership group is a well-established patient led initiative which assists with improving patient experience and provides support to people affected by cancer. Membership of this group would be an opportunity to feedback experiences and support projects underway within MKUH and the Milton Keynes area. The website for MKCPP is: http://www.mkcpp.org/ or contact can be made through firstname.lastname@example.org
For any individuals wishing to keep involved with further Alliance activity, opportunities will be ongoing for patient representatives, please do make contact with the Alliance to discuss this role further and get involved through contacting email@example.com.