NW London User Partnership Group – NW London Cancer Network

Tonight’s meeting of the User Partnership was, as usual, enlightening and thought provoking.

The main agenda item was in relation to the new NHS structure, how it will affect cancer services in NW London and what the ‘London Cancer Alliance’ really is!

The London Cancer Alliance (LCA) is a new collaborative partnership of 17 acute provider trusts across NW, SW & SE London. Its aim is to improve cancer patients’ experience, outcomes and quality of life though the delivery of excellence in clinical care, research, innovation and education; ensure equitable access to integrated pathways across primary, secondary, tertiary, community and third sectors; promote prevention and early detection of cancer by influencing public health messages.

A presentation was given in regards to the new structure proposed at the LCA. We saw the list of the 17 partner trusts that have now signed up and committed to the LCA and proposed timescales for implementation and appointment.

There are many reasons for the LCA, not least in order to set standards, propose and regular accreditations for providers of cancer services throughout the LCA, co-ordinate and share cancer research and exchanging information and best practice.

In a perfect world however neighbouring areas would always have shared, set standards, created and managed best practice but we know that this didn’t always happen and there has often been an element of competition when there should have been collaboration.

The new structure of the LCA should be more patient focussed. Demonstrate via metrics that there are improved patient experience and outcomes in London. To support neighbouring providers, hospitals and organisations rather than relish in their failure!

So will it work? How long will it take? Will it be implemented in this format or re-shaped again?

It is anticipated that it will be fully delivered in its current format within 3 years. Will it work or will it need re-shaping? Yes it’ll probably morph a little… but hopefully to include new innovations or progress that will make it work better. So will it work? I hope so. Wouldn’t it be a great place if within London Cancer Alliance area, there was patient-centric collaborative care?

One final point with regard to the new NHS structure including the LCA, WE, patient advocates or people who have been affected by cancer (directly or indirectly, as patients, carers, friends, colleagues or relatives) must also be involved in the creation, moulding and upholding of any new structure.  At all stages we should have representative to ensure that the discussions remain patient-focussed rather than budget or even ego led!

Also discussed was how we, patient advocates and members of the user group, could assist in better awareness of symptoms of cancer. The age old argument was made that 20% of cancer deaths could be prevented IF the symptoms were recognised earlier and that often people will return a number of times to a GP before being referred. We know this to be absolutely true and there are various projects underway to help educate GPs, for example:

GP Awareness campaign from Sarcoma UK
Macmillan DVD – Care in Primary Care – a toolkit, Macmillan Learn Zone
NHS Cancer Screening Programme information packs

Is there some way that you could get involved?  Have you been affected by cancer?  If so, could you speak at your GP practice, hospital, nurse training etc?

However WE must also educate the general public. If we know that cervical screening saves lives, why do some people not turn up for screening or have never been screened? The same applies for mammograms and the bowel cancer screening programme.

The point was also made that despite it being increasingly difficult (in some practices) to get a GP appointment when you need one.  Comment was made about the sign that you see in some GP practices that ‘warns’ patients that they can only bring one issue to the GP per appointment – does this stop some patients from mentioning more than one symptom? Surely the education must also extend to educating the patients in how to get the most out of their appointment time.

We need to utilise the GP appointment time more efficiently. Make a list of symptoms. Note down the time of day or physical activity at the time of the symptoms. Take the list with you in a readable format and, if you’re uneasy about discussing them, give the list to the GP.  Take a notebook and pen with you to write down any answers or observations that your GP may make.  If there are any familial concerns about a symptom such a family member being diagnosed, remember to mention it too!

The Daily Mail published an article about the 7 vital steps to making the most of a GP appointment.  Click here to read

My final word though – if you’ve a friend or relative who’s concerned about going to the GP or whom you think may have concerns asking questions, stating symptoms etc, why not go with them?

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