Hosted by the Kings Fund in their wonderful building in Cavendish Square the Pan London Event was well attended.  Currently the approach to follow-up for cancer survivors is centred around routine outpatient appointments.  The purpose of this event is to look at developing and testing new approaches to follow up care for those living with and beyond cancer.

The agenda for the day looked to tackle many of the areas and the speakers are experienced and experts in their fields.  However I was a little scared (and rightly as it turned out) about the amount of content for the day. Most of the speakers had between 15 and 30 minutes for their presentations!  I wonder if it would have been better to tackle half the amount of subjects and to have a further event or perhaps make it a two day event.  Sadly, in my opinion, I do feel that for many of the speakers they barely had time to scratch the surface and therefore negated the power of the event.

A link to the full agenda is Pan-London-Survivorship-conference-25th-November-2011.

I won’t go into great detail as a great many of the points made I have previously discussed in this blog.  However bullet points for thought, discussion and response:

• Cancer incidence is rising.
• Cancer mortality is falling.
• We NEED to action a survivorship programme (with funding and holistically) for the increased quantity of people requiring it.
• We need to put these plans into action NOW as the increase will be unmanageable before we know it.  (Although personally I feel it is already here!)
• Within the Cancer Reform Strategy there are 4 new partnership initiatives:
  • NAEDI – Awareness and early diagnosis
  • NCSI – Survivorship
  • NCEI – Inequalities
  • NCIN – Intelligence
• We need to ensure that each of these 4 partnerships work collaboratively but not in competition with eachother.
• Cancer practice needs to be reviewed to be personalised for each person affected.  We can no longer treat a 17 year old with breast cancer in the same way as a 70 year old!  One size does not fit all and considerations need to be made with changes to the pathways and personalisation at the fore.
• When we refer to ‘Living with and Beyond Cancer’, there are many considerations and organisations that should be involved – COLLABORATIVELY:
  • Information and communication
  • Psychological support
  • Supportive and palliative care
  • Clinical Nurse Specialists (we need more of these not less!)
  • Cancer Patient Experience Survey Programme.  Many areas need improvement and this survey is a great way of measuring these.  Should be run regularly and measurable penalties be applied.
  • National Cancer Survivorship Initiative.  Working with all third sector organisations to ensure that this initiative is actionable.
• In 2010 the NCSI-Vision-Document document was published.  This document details the five shifts required in the vision, the priority areas and a general iterative process to achieve this vision.
• We have a long way to go but at least survivorship is now firmly on the agenda and there’s barely a meeting when it’s not discussed… we just need to make sure that firm plans are in place for anyone living with and beyond a cancer diagnosis.
• A presentation from Macmillan Cancer Care identifying the cancer care pathway and also crunching numbers of people and stages – this focused on London and despite having heard these numbers plenty of times, it still comes as a shock that they’re so high and rising!
• Natalie Doyle of The Royal Marsden presented about why Holistic Needs Assessment is so vital in patient care.  A holistic health and social care assessment is undertaken in order to identify supportive and palliative care needs of an individual and to trigger any specialist assessment that may be required.  For instance, home help, nursing staff visiting at home, transport to and from hospital, psychological support, social and occupational needs and spiritual needs.
• Holistic Needs Assessments should be carried out at a number of points and revised accordingly:
  • Around the time of diagnosis
  • Commencement of treatment
  • Completion of the primary treatment plan
  • The point of recognition of incurability
  • The beginning of end of life
  • The point at which dying is diagnosed
  • At any other time that the patient may request
  • At any other time that a professional carer may judge necessary
  • Each new episode of disease recurrence.
• We know that often nurses are under a great deal of time pressure and there are cutbacks affecting the number of CNS available.  However this should not affect whether an assessment is carried out.  It should take no more than 30 minutes.
• The holistic needs assessment and/or treatment summary should be sent from the hospital team to the GP surgery.  The GP should then assist in ensuring that any additional care is implemented and managed locally.
• We had three presentations fro Cancer Networks showing the sort of projects that had been undertaken within London with reference to breast follow ups, supporting people with brain cancer at work and a cancer transition programme.
• A presentation regarding the Late Effects work being undertaken at the Royal Marsden.  A critical piece of work that is looking at the long term effects on surviving cancer patients.  In the past life expectancy has meant that many of these effects of treatment (chemotherapy, surgery or radiotherapy) haven’t come to light  However more particularly for people being treated at a younger age, this research is imperative to allow them to survive WELL as well as survive.
• Pawan Randev spoke about the impact of survivorship on GPs and primary care.  He referred us to the November 2011 edition of the British Journal of General Practice – Cancer Survivorship.

A few other reference points would be to the HSJ Supplement from April 2011 –  HSJ_survivorship_supplement

A further tool book – The Cancer Survivor’s Companion.