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What Comes Next?

It is one year since our group met indoors. Since then, following the Covid restrictions, at first we had no meetings and then in late summer we met face to face outdoors. Since then and the second lockdown in November and the third at the turn of the year we have used Zoom to meet.

Understandably, the numbers attending have dropped and we are all looking forward to getting back to normal. There are many questions around that possibility and it is likely many things have changed for ever.

So what lessons have been learned? What will laryngectomy care look like and what would we like to see?

  • All our group members have now had their first Covid vaccination and in a few months will have had their second. A return to “normal” may not happen quickly because vaccines do not give 100% protection and a further wave of infection in the autumn is anticipated by many scientists.
  • Chesterfield Royal Hospital is promoting online out-patient meetings and I have just recorded a video supporting their campaign for this development. Of course many appointments have to be face to face, but for others a videoconference is just as effective and for both patient and clinician they are very easy to manage.
  • I use the cheapest voice prosthesis, a Blom-Singer duckbill valve, and have recently replaced one after 12 months service. I change the valve myself and was unaffected when valves services were restricted last summer. Valve plugs and liquid thickeners are a poor substitute for having a leaking valve changed in a timely fashion. Why have patient changeable valves apparently fallen out of fashion? They are cost efficient for the NHS and the patient benefit is considerable.
  • Laryngectomees have been used to having an annual influenza jab, regardless of age. It will be perfectly manageable if we have to do the same for Covid.
  • During the pandemic, life-saving laryngectomy operations have continued. In some areas peer support for patients from previous laryngectomees has been possible. There is no excuse for this not being offered, via video or otherwise.

 

HEAD AND NECK CANCER DURING COVID

Once the pandemic started last March there was an immediate effect on the treatment and follow-up care for head and neck patients. For laryngectomees valve services were restricted and for new patients there were delays in assessment and treatment.

This was down to the need to protect patients and staff from the virus and because staff were diverted from their usual roles to support colleagues in ICUs. Also there was some fear amongst patients about picking up Covid whilst in .hospital.

Some evidence is now becoming available about the consequences for head and neck patients. Read about it here

The Forgotten C

2020

Nobody, in December 2019, could have foreseen what was to follow when we moved into the year 2020. There were reports of a new virus that had been seen in China but the impact it would have across the world  and in the UK has taken us all by surprise.

Laryngectomees need support from their local hospital for life. Having a leaking voice prosthesis can be managed for a few days but for a longer time it greatly affects quality of life. In the spring and early summer many patients experienced this. Valve services were gradually restored and, I think, lessons have been learned.

Most members of our group had shielding letters in March and since then have been very careful, following the social distancing guidelines strictly. This has come at some cost, not least the  isolation from family and friends. Some members have now had the Covid vaccination and the rest of us will be waiting impatiently for the invitation to do the same.

HNChelp has done its best to sustain our work to support our members and new patients. We have made use of virtual platforms like Zoom to help individual patients and to hold group meetings. However, with help of the vaccination programme, we are looking forward to meeting together again, in  person,  within a few months.

Best wishes for 2021!

Laryngectomees During Covid – Important Survey

Many laryngectomees took part in a survey during summer about their experiences during the pandemic. SLTs around the country asked their patients to help at the request of Professor Jo Patterson (University of Liverpool) and Dr Roganie Govender (University College London).

There are some important results and we look forward to more detailed information  in due course. A briefing is presented here

Laryngectomy audit briefing.Final

Together Again

UPDATE

Since the meeting in August, described below, we held other meetings on September 8th and October 13th.

The Rule of 6 limit for gatherings does not apply to support group meetings like ours, so we will not be ignoring guidance or even the law. However some members may feel that they do not want to risk joining us due to their vulnerabilities, which may not be confined to being a laryngectomee.

We plan a further meeting in November but when we get to December a Zoom meeting will be used to bring us together,

Our plans are subject to modification if the legislation and guidance around Covid changes.

AUGUST

Finally, after 5 months our group was able to meet again. We chose an outdoor location, Holmebrook Valley Park, close to our normal meeting  venue.

The weather was kind to us , though temperatures were high, and we found a shady location. The turnout was high but we missed a few regulars who had medical appointments or other problems.

Since we met in March members have experienced bereavements,  complications after treatment and other issues. It was great to be able to share news and listen to our friends once again.

Members heard of two new laryngectomees we have helped and donations from a couple of regular supporters. Everyone present decided to meet again, in the same location next month.

chesterfield club

Emerging From Lock-down

The events of recent days have confirmed any doubts that Coronavirus is with us for some time ahead. Around Europe, infections rates have increased following relaxations in restrictions and travelling abroad from the UK carries the risk of quarantine at short notice on return.

Patients who have developed cancer will have been disadvantaged by the restrictions on seeing a GP and the fear of going to a hospital and being infected with Covid 19. My local hospital has just reported having no Covid patients for the first time in many months. Hopefully this will encourage patients to seek investigation and treatment without delay.

I have recently provided peer support to a patient facing a laryngectomy. This was not possible in the way I have done this for over ten years, with face to face meetings being too risky. At the invitation of Chesterfield Royal Hospital the meeting took place online. This, I am sure, will be our way of working in the foreseeable future, and it worked well!

HNChelp meetings cannot take place, as usual, in an indoor venue. Next month we have planned an outdoor meeting (see the meetings page) when we will be holding a gathering within the current guidelines. We are looking forward to sharing experiences and giving mutual support once more. All we need is some good weather on the day!

 

 

Old, Alone and Stuck at Home

This Channel 4 programme by Rogan Productions and broadcast on May 20, included contributions from NALC Vice-President Trevor Hutson and wife Sally – they can be seen below

Catch up on All 4 if you missed it.

Resources For Zoom Users

NALC is contributing to webinars organised by Severn Healthcare. They will use the Zoom platform. Many laryngectomees have been using Zoom during the lock-down to communicate with family and friends. Others may be unfamiliar with its use so some assistance is given here.

If you apply to join the meeting you will receive a link in an email. To join the meeting click on the link at the appropriate time. Beforehand you may want to make sure your device is ready and learn a bit about your options during the meeting.

Zoom can be accessed using a smartphone or tablet using an app downloaded from the relevant store. Alternatively with a laptop a browser such as Chrome or Edge can be used The link below can be used to test the laptop setup and internet connection to ensure Zoom will work.

ZOOM TEST

A user guide (pdf) is here

HowtoParticipateInAZoomMeeting

The NCRI produced a powerpoint presentation about using Zoom

Intro to Zoom (consumer guidance)

Coronavirus “Extremely Vulnerable Group”

UPDATE 24/6/20

As was correctly reported last week, shielding will end on July 31st. Further announcements about changes, such as reducing social distancing to 1 metre in some situations, are coming thick and fast. I suspect many of the vulnerable and extremely vulnerable will be making decisions to keep safe, just as they did before the lock-down. The situation, for many, may be getting a bit confused and further guidance is needed in good time.

This article raises some valid concerns.

BMJ Blog

UPDATE 18/6/20

The Health Service Journal has reported shielding is likely to continue until July 31st.

If you are currently shielding and are not getting the support needed then this may help

help

UPDATE 25/5/20

Public Health England have advised us that laryngectomees are not going to be added to the extremely vulnerable group. However there is a route an individual can take and that is to seek help from their GP or hospital clinician who have the power to add the patient to the group. In my experience hospital clinicians have provided better support to our community.

The current period for which this group have been asked to isolate completely at home extends to the end of June. There remains the possibility they may be advised to continue to do this for even longer, and I assume would continue to get the extra support with the delivery of shopping and medications.

UPDATE 30/4//2020

The CLT have been advised “the Chief Medical Officer’s office have now confirmed that their panel will consider this issue”. We await further news of the timing.

UPDATE 26/4/2020

NALC joined many clinicians groups such as RCSLT, BAHNO and ENT UK in sending a joint letter to Public Health England last week asking that laryngectomees be added to the list. We await a response and in the meantime contacting a GP for support  (see below) in getting on the list is the best option.

Important information  came from a response to the Cancer Larynegctomy Trust:

From: CANCERPOLICY, England (NHS ENGLAND & NHS IMPROVEMENT – X24) <england.cancerpolicy@nhs.net>
Sent: 09 April 2020 10:50
Subject: RE: Laryngectomy
Yes, someone who has had a laryngectomy is likely to be considered extremely vulnerable as the upper airway cannot be protected as well as usual. Patients should discuss directly with their cancer care team and GP, who will have discretion to add them to the vulnerable list. In the meantime, if they are concerned about their risk of infection they should follow the shielding guidance.
With best wishes,
Kasia

Kasia Olszewska
Parliamentary and Briefings Officer
NHS Cancer Programme
NHS England and NHS Improvement

 

NALC has had several communications from clubs about the risk status of laryngectomees and the absence of a categorical statement of our inclusion in the list of at risk groups. NALC is  joining with clinician groups like the BLA to pass a strong message to NHS England that we should be specifically included in the lists. This will help in many ways, not least in convincing employers that it is not safe for laryngectomees to turn up to work as normal and accommodations must be made.

It is possible for patients and/or carers to request to be added to the “extremely vulnerable” group. We are aware of laryngectomees who have successfully used the link below, but others have been rejected. The link is:
www.gov.uk/coronavirus-extremely-vulnerable

 

On the BBC News website it was reported on April 7th:

NHS Digital, which compiled the list of the vulnerable, said it had identified about 900,000 patients who should have already received an official letter or text.
However, it said GPs and hospital doctors were now adding a further 600,000 patients.
It also advised people to register themselves on the website (see above) if they needed extra help and support.
The Department for Environment, Food and Rural Affairs (Defra) and the Royal College of General Practitioners have also advised those who feel they had been missed off the list to contact their GPs.

Covid 19 is a new virus. It is impossible to have  information about how exactly laryngectomees may be at risk.  Hopefully NHS England will choose to take a safety-first approach in meeting our needs and add us to the vulnerable group on request.