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Feedback from EMAS

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.

European Launch of the Global Tracheostomy Collaborative (GTC)

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.

Bill Mountford

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.

Laryngectomee Safety

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.

gtc ntsp

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.

 

Summer Meal

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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.

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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.

AGM National Association of Laryngectomee Clubs

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.

Annual Report (2013/14)

Financial Matters

The Rotary Club of Clay Cross has supported us again during the year and Countrywide Supplies assisted us with the travel costs to the NALC Patient Day in Nottingham. We have been the grateful recipients of some sizeable donations and our members have also contributed by generously supporting raffles and in other ways. As a result, our income has broadly matched our expenditure and the group continues to have a secure financial position.

Meetings and Membership

We have held 10 afternoon business meetings and 10 evening social meetings, mostly at The Olde House, Chesterfield. Attendance at meetings has been good during the year and we have 25 patient members, We have recruited new members in Notts and Lincs but sadly 2 members have passed away. Partners/carers have, as usual, played a very important role in our work. Following the closure of the Kings Mill Laryngectomy Club and the continued absence of a laryngectomee group in Nottingham we are continuing to try to support patients beyond the Chesterfield Royal Hospital catchment area, and this has included responding to requests for help from Nottinghamshire Social Services.

Special Events

A summer evening meal was organised at the Hackney House in Barlow. The members and friends present enjoyed good food in comfortable surroundings. Our Christmas lunch, at The Olde House, was well supported. Again we entered two teams into the Mayor’s charity quiz evening, at The Olde House. Ten members attended the NALC Annual Lunch in York in September and 15 attended the NALC Patient Day in Nottingham in February. A trip to the Victorian weekend in Matlock was also arranged in December.

As in the previous year, at an afternoon meeting, we welcomed representatives from Platon Medical to demonstrate new prescription items for laryngectomees. Members enjoy these sessions and they have proved to be of real benefit to them.

Other Activities and Developments

We have maintained strong links with the Chesterfield Cancer Drop-in Centre. Two of our members, along with Dave and Barbara Wallace from the centre, are heavily involved in the group that have been successful in organising a minibus to take patients from Chesterfield to Weston Park Hospital in Sheffield for radiotherapy.

We continue to have many members who are also members of Heading Forward, the support group run by the specialist nurses from Chesterfield Royal Hospital.

As mentioned above we have attempted to support patients in Nottinghamshire, and more recently Lincolnshire, who have no support group of their own.

There have been fewer requests from Chesterfield Royal Hospital for support for patients facing a laryngectomy but we have responded to every request received.

We have continued to network with other health-related voluntary groups through NDVA.

Our Secretary, Malcolm Babb, was elected President of the National Association of Laryngectomee Clubs.

We organised a focus group to gather opinions on treatment modalities – surgery/radiotherapy /chemotherapy – and the results assisted a proposed clinical trial CompARE to achieve funding from Cancer Research UK. This will be one of the most significant head and neck cancer trials in the next 5 years.

In Memoriam

2013 saw the passing of Brian Roberts, a member of 5 years standing. Brian particularly enjoyed the social opportunities HNChelp provided, along with his daughter Pam, He will be missed very much and we are very grateful to the Roberts family for their generous donation in his memory, which will help support our work in the future.

Links: Members of our group have been involved with:

North Trent Cancer Network: Head and Neck Site Specific Group, Patient Partnership Group and the Consumer Research Panel. (Since North Trent was absorbed into a wider Yorkshire network the groups have continued but their activity will reduce, due to lack of funding, from April 2014))

North Derbyshire Cancer Action (formerly the North Derbyshire Cancer Services User Group)

National Association of Laryngectomee Clubs General Committee

National Cancer Research Institute Head and Neck Cancer Clinical Studies Group

National Cancer Intelligence Network Head & Neck Cancer Clinical Reference Group

Clinical Reference Group B16 – Complex Head and Neck (NHS England) (Specialist Commissioning)

North Derbyshire Voluntary Action

Providing a patient perspective for a variety of cancer research studies and trials.

Future Aims

We will continue to expand our programme of social activities.

We will try to build on our contacts in Notts and Lincs to improve the support we can offer in those areas.

Though we made no progress last year in producing video resources for laryngectomees, we hope to do so in the forthcoming years.

With the larger cancer networks, there will be fewer opportunities to represent our members but we will take the opportunities provided, including in the forthcoming consultation on the reconfiguration of head and neck services.

 

Stephen Sutton

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(Jason Manford visiting Stephen in hospital recently)

Stephen was initially diagnosed with cancer aged 15 and sadly a few years later it became clear the cancer was terminal. Stephen, now aged 19, has worked tirelessly to improve the support and facilities available for teenagers and young adults with cancer. Apart from fundraising has been involved with contributing to research as a member of the NCRI  clinical studies group for Teenagers and Young Adults and also the CLG.

Last week, Stephen experienced a deterioration in his condition and posted what he thought might have been a last message on Facebook. The response from the public encouraged by many celebrities was to raise the donations on his Justgiving page from around £500,000 to over £2,500,000 to date.

I had the pleasure of working with Stephen as a member of the NCRI CLG. Please support his fundraising efforts by visiting this link and making a donation.