Report from the Patient Panel Cancer Conference - April 2018

Report from the Patient Panel Cancer Conference - April 2018

Notes from the Patient Panel Cancer Conference, Harlow

29th March 2018; 10am-3.30pm

This event was attended by 60 to 70 people with a mix of Acute healthcare professionals from Princess Alexandra Hospital (PAH), charity executives (Macmillan, Hospices and Age UK), patient groups such as Prostate, and some Patient Participation Group members. There were 6 information stands from Macmillan’s, Hospice organisations, Essex Help, and the Hospital Patient Panel.

The whole session was very informative, with a lot of time spent on seeking feedback from the attendees, particularly in the breakout sessions on how to improve the patient and Carers experience of Cancer Care.

Agenda and notes

Nancy Fontaine - Chief Nurse, Princess Alexandra Hospital - video recording of a positive message about performance and the good news regarding PAH and moving out of special measures.

Mr Gordon Read, Consultant - Cancer Services. Mr Read did a super introduction to the day explaining that all Cancer stems from the uncontrolled growth of malignant cells in the body. All body cells are replaced over time. When a cell contains a malignancy then the cell replacement cycle goes out of control and damages the body.

Cancer risk can be reduced by stopping smoking, reducing or controlling weight and increasing exercise

PAH Cancer treatment is amongst the best in the country. This is due to the Multi Disciplinary Team approach in Harlow by Doctors, Nurses, Pathology, Radiology and Specialist Cancer Nurses reviewing every patient, together with close cooperation between nearly 20 different hospitals around Essex, Cambridge, London, Liverpool, Oxford and elsewhere.

Tina Smith, Macmillan Head of Nursing for Cancer Services, PAH: Hosted the day and introduced the working concept for the day.

Shahid Sardar, Associate Director, Patient Engagement and Experience Team, PAH: Introduced the series of patient story videos which were very powerful. The first was from a grandmother who was going through chemotherapy for the second time following a recurrence of cancer getting the message across about not hearing everything the clinicians said about her treatment or drugs ( shock and too complex were her observations) . Make a list of your symptoms and feelings to share with the doctors/ GPs and nurses. The second was from a young father, aged 30, who was undergoing treatment for Bowel Cancer .  His advice was keep persevering when you have body function changes - he had blood in his stools for 5 or 6 years before he was eventually referred onto the Cancer Pathway by a new GP . No one is too young to get Cancer. Understanding the side effects of drugs and Cancer treatment was very important in helping to manage patient Choice.

Working group’s feedback

  • Management of the side effects - Long and short term effects
    Good group of mixed current and past Cancer patients together with nurses. Key feedback was better, clearer understand and explanation needed about side effects of drugs , drug treatment periods, and alternatives in surgery and chemotherapy treatments. What about the understanding of illiterate or low literacy patients? What are the workarounds for this type of patient? Information is needed 24x7 not just given during the treatment times when the patient is focused on the activity of fighting cancer.
  • Life after the Challenge?
    This was well attended, unfortunately most of the people in my group were Health professionals with just two patients. However, the leaders led us into an in-depth discussion of what kind of help patients might need after the cycle of treatment was complete. Not only the physical effects, but also the mental side of things.
  • Money Matters
    I found this a very interesting view of the various kinds of financial help and advice that is available to patients. Emphasizing to the professionals that they might need to guide the patients to the various sources of advice and help – both from the state and the volunteer services.
  • Who Cares?
    Again a mix of patients, volunteer workers and NHS staff. The intention was to make sure that everybody is concerned with letting ALL patients know that there are lots of people out their caring for their wellbeing. Not only their families and the NHS staff, but all the people available through the voluntary services.
  • Young People and Carers
    There were a smaller mix of Hospice and charity workers plus patient relatives . Key observation and actions were: Make sure information on Cancer Care and parent support is available at all times, keep a list of the symptoms and observations of the young cancer patients, share treatment stories to help other families, think about the access of information  through the use of internet , especially the hospital website. Be aware  of a potential black hole when the patient turns 18 and moves on from being classed as a child - although the age range has been extended to 25 there might still be a bit of an issue

Summing up / Next Steps

We both thought that the event was a good idea, well run with plenty of good advice for both patients and help providers. Mike would have liked to see a better balance of patients to NHS/Voluntary Staff, however when this was discussed with the organisers they pointed out that every group of profesionals that the spoke to (Nurses, District Nurses, Consultants, Charities etc. etc.) they all said “What a good idea, can we contribute?”. Mike would like to find out if East and North Herts Trust have a Patient Group, and if that patient group runs events like this? If so why haven’t we heard of it, and if not why not?

Report by Mike Carn and Justin Jewitt    

Last modified: 

30 Aug 2019