Information and data empower decision making. The past 18 months have seen unexpected challenges arising from the Covid pandemic. Laryngectomees, breathing through a neck stoma, are vulnerable hence research about what has happened since March 2020 is to be welcomed.

A large-scale survey was carried out in the UK  and the results have now been published:

SURVEY

Patients not only provided the information by responding and completing the survey but also contributed to the analysis of the results. As always NALC made a valuable contribution.

This week has seen the publication of an important source of information and support for head and neck cancer patients about the challenge of returning to work after treatment. Chris Curtis and The Swallows, with support from others, deserve great credit for raising awareness of this issue in their Back to Work Guide. It is available here

LINK

In the last couple of decades the age profile of patients has changed, with the increasing causal involvement of HPV in head and neck cancer. With patients consequently presenting at a younger age, the wish to return to work is of even more importance.

I had a laryngectomy aged 51, which was at the lower part of the usual age range at the time. As a secondary school teacher my employment depended on my voice and I had no certainty of being able to return after the operation. As it happened, after primary surgical voice restoration, I had reasonable valve speech but it was not up to speaking several hours during a working day. Fortunately the surgery left a great sweet spot on my neck for placement of an electrolarynx (EL). Subsequently the EL has been my primary method of speech and enabled 4 more years work as a teacher, before taking early retirement in 2007.

My experience illustrates a key factor in determining the ability to return to work – the functional outcomes after cancer treatment and how the demands of the job can be met. There are many other relevant factors but some of these pose important questions about impact of equality issues on the ability to return to work.

As a teacher, I was a public sector employee. With that came many benefits, such as decent sick pay, continuing for many months. Recovering from a laryngectomy takes a long time and it was nearly a year before I returned to work full-time. Had my employment circumstances been different, with less advantageous terms of service or had I been self-employed, the outcome may not have been so positive.

This is an area where there has been little research to guide us. Abi Miller, SLT at Chesterfield Royal Hospital, and Emma Kinloch, NCRI Consumer Lead, have both been working recently to remedy this. However this is only a start.  In the meantime the Back to Work Guide will be of great benefit to patients accepting the challenge of returning to work.

Our group had intended to organise, later this month, its first indoor meeting since March 2020. However, despite all of us having had both jabs we have changed our plans.

Even as early as February 2020, some members changed their plans including cancelling trips to London, given reports of the arrival of coronavirus. Most members later received shielding letters, being extremely clinically vulnerable,  and have been taking every precaution to avoid infection. There is a reluctance, given the high current infection rates, to return meeting indoors. So for the moment we will meet outdoors or via Zoom.

Whilst this is disappointing, we are not back to square one. The vaccinations continue to appear to give protection against severe disease needing ICU care. Speech and language therapists have developed some excellent strategies to ensure speech valve services can continue. We will be meeting together again, as usual, before long. In the meantime we will be staying in touch and supporting each other as best we can.

As well as looking to stay safe ourselves we are thinking of the nurses, doctors and SLTs who support us. They face many pressures if there is another wave of infection and our thoughts are with them.

It is now over a year since the first lock-down in response to the Covid pandemic.  Laryngectomees are vulnerable to Covid 19 and their lives were affected in many ways. After a laryngectomy patients will need support from clinicians for the rest of their lives, managing the neck stoma and a voice prosthesis. What effect did the pandemic have on these services and other aspects of daily life?

This survey of patients experiences gives some indications.

LARYNGECTOMY COVID SURVEY

(clicking on the link above will download the survey results)

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.

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

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!

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

A current concern for laryngectomees is the timing of Covid vaccinations. This depends primarily on age but status with respect to Covid – vulnerable or extremely vulnerable – makes a difference also.

This document provides information and NALC’s perspective.

Laryngectomees and Coronavirus3

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.

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