Cancer outcomes in the UK are made worse by late presentation.
HNChelp had a fundraising stall at Chesterfield Royal Hospital this week, raising funds or NALC. This should take our total to well over £200 towards the ribbon project.
As well as selling ribbons we gave out leaflets advising about the early signs of head and neck cancer, shown in the picture below.
Earlier this year, a report called “On the Right Trach” was published by the National Confidential Enquiry into Patient Outcomes and Death. It reported the results of a survey from over 200 hospitals into the treatment of laryngectomees and tracheostomees.
Amongst the findings were:
55% have no resuscitation policy for laryngectomees 64% have no policy for dealing with emergency presentation of laryngectomees in A&E departments 81% did not display bedhead signs for laryngectomees as recommended by the NPSA in 2010
Members of HNChelp will be exploring these issues at our November meeting when a representative of Healthwatch will be present.
This year the location chosen for the NALC lunch was Harrogate, at the Old Swan Hotel. Members of 12 clubs based in diverse locations from London to Newcastle, including 9 of us from HNChelp, attended the event. We were looked after well by our hosts and the food was excellent.
NALC is charting uncertain waters, now that Macmillan is phasing out its funding. As a result there was considerable attention on fundraising. HNChelp members, led by Marjorie Thorne, have put in place the first major fundraising activity, the Ribbon project. As well as selling ribbons, the project involves raising awareness of the signs of head and neck cancer to encourage early diagnosis and improve the chances of survival.
The gallery contains some more photographs taken on the day.
A couple of years ago the cancer networks and the NCRI led the way in patient and public involvement in the NHS.
Since April 2013, the cancer networks have reduced in number and each now covers a large geographical area. The former North Trent Network Head and Neck group is gone, for all practical purposes, and with it the input of service users. Now the preferred model for patient involvement is through virtual groups, communicating online.
Cancer research in the UK is led by the NCRI. There are groups dedicated to promoting and organising clinical trials for each cancer site, such as head and neck. These groups have embraced the involvement of patients and carers from their inception around 12 years ago. Now the funding for this patient involvement is in doubt despite an admirable record of achievement, acknowledged world-wide.
The driver for both the changes described above is the shortage of funding. Since its launch in 2012, NHS England has trumpeted its belief in the value of patient and public involvement. It is surely time to demonstrate that commitment to PPI by funding it appropriately.
At a recent business meeting we had the opportunity to raise concerns with a representative of the North Derbyshire CCG. Though the focus was on recent matters members did share their experiences of needing to call an ambulance and the response provided to “neckbreathers”
Problems mentioned included the application of a mask to the mouth and nose rather than the neck stoma and the lack of a suitable mask for oxygen delivery.
We have received as a result of the discussion the following reassurance from PALS at EMAS
Thank you for passing on concerns raised via a patient group regarding the care and treatment by ambulance staff to patients who are neck breathers.
I can confirm we have been proactive in this area of patient treatment having worked with the Head and Neck Cancer Support Group when they raised similar concerns.
Please be assured:
- All our education courses include training on the management of tracheostomy patients and appropriate routes of administering oxygen
- Oxygen masks for tracheostomy patients are readily available on all stations and as such they should be on all vehicles –a reminder was issued to staff to ensure that they are on the vehicles
In addition the Head and Neck Cancer support group shared a training package with our service which was shared in order to support our existing training material.
I hope that this information helps to offer assurances to the group. If there is an individual concern regarding an ambulance attendance then we are happy to look at this in detail.
HNChelp is grateful to both EMAS and the CCG for this response.
This event took place on Monday July 7th at the Royal College of Surgeons in London.
The GTC aims to improve on the treatment and safety of all neckbreathers (laryngectomees or tracheostomees) when they need medical care. It follows on the work of NALC and the NTSP in the UK.
Our Secretary, Malcolm Babb, was invited to speak at the event in his capacity as President of NALC. He used the opportunity to highlight examples of poor care, including that received by members of HNChelp. A video of his presentation is available here
GTC launch (advance to 11-21am)
One of the highlights of the event was a talk by Professor Stephen Hawking sharing his experiences as a tracheostomy and then later as a laryngectomee.
It was a shock today, on reading the Derbyshire Times, to learn that Bill Mountford has passed away.
Bill was a staunch, loyal and in every sense a generous member of our group. He did not have an easy journey after his laryngectomy operation and it was a great pleasure to see him finally achieve a new method of speech last year.
He shared a love of fishing with several others in the group and most meetings saw him sharing the latest joke he had heard, though until recently that was done by him using his notepad.
Bill will be missed but not forgotten. We send our condolences to his brother Dave and the rest of his family.
Neckbreathers such as laryngectomees and permanent tracheostomies are not numerous. Medical and emergency service personnel do not meet us that frequently. This unfamiliarity can lead to unfortunate consequences, especially when accompanied by a lack of training. There is no point in trying to deliver oxygen or rescue breathing through our mouth or nose. Only the stoma, or hole in our neck, offers a route to our lungs.
In the worst cases errors can lead to death though more frequently the consequence is a delay in the necessary treatment and a loss of confidence in medical staff. Several members of HNChelp can report on such errors and there have been several incidents within the North Trent region in the past year.
The National Tracheostomy Safety Project (NTSP) has been working to improve the safety of neckbreathers, tracheostomies and laryngectomees, when in hospital or in other situations.
July 7th sees the European launch of the Global Tracheostomy Collaborative (GTC). This is a world-wide initiative to improve the treatment of neckbreathers wherever they live. The NTSP support the work of the GTC, as does NALC.
I have been invited to speak at this event at the Royal College of Surgeons, to provide a patient perspective. The headline speaker on the day is Professor Stephen Hawking . I will report on the event at a later date.
Guest of Honour was Tony Curtis, our former treasurer, who can be seen above (on the left) receiving a presentation of thanks from Ray Mountain, Chairman of HNChelp. Tony was instrumental when the group became independent from Chesterfield Royal and without his efforts the group may not have survived.
Members present had an enjoyable evening with excellent service from the staff of The Olde House and very good food. New treasurer Pam Gill organised a raffle and members contributed generously to the cost of the event. Absent friends were in our thoughts, especially those unable to attend for reasons of poor health.
At this meeting, on Monday May 19th, our Secretary, Malcolm Babb was re-elected as President of NALC.
NALC faces a challenging year as it adapts to life with reducing funding from Macmillan. Members of HNChelp have come up with some useful ideas for fundraising activities and will be working hard to ensure the survival of NALC.