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Together Again

UPDATE

Since the meeting in August, described below, we held another meeting on September 8th and plan to meet again on 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. The increasing incidence of coronavirus infections may mean the meeting in October will see a lower attendance.  However we know  of some support needs that will mean the meeting is not cancelled.

When we get into winter then alternatives such as Zoom meetings will be used to bring us together,

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

Covid – Help Yourself and Others

It is becoming clearer that there will be no quick fix for Covid-19 and vulnerable groups such as laryngectomees will have to keep up their efforts to stay safe.

If you have a smartphone please consider downloading the app as described     HERE    You will be aiding research to fight Covid.

You need to be prepared to spend 1 minute every day reporting on your health, well or unwell.

You may find some of the up to date information  on the website provided by subscribers helpful to you, especially letting you know about infections in your area.

You may want to assess for yourself considerations about privacy and security if using the app but the aims of the project are laudable.

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.

Coronavirus – BAHNO Guidelines, NTSP and ENT-UK Advice

UPDATE May 17

BLA, ENTUK and RCSLT have produced new guidelines as services slowly return to normal. Of particular note is the statement:

“As voice prosthesis care is considered an AGP, full PPE will be required with post procedure cleaning / decontamination procedures in line with PHE guidance and local infection prevention control.”
(AGP – aerosol generating procedure)

Patients need to be aware of the impact of the coronavirus pandemic on the way their hospital will deliver care. On March 25th the British Association of Head and Neck Oncologists published this:

BAHNO recognises that the management of many patients with cancer will have to be modified during the current COVID-19 crisis.  One particular group that may cause management dilemmas are those with voice prostheses.

Reinsertion of tracheooesophageal puncture (TEP) voice prostheses

  • Attendance at hospital out-patient and Emergency Departments should be avoided
  • Contact patients by telephone/video call/email now with advice on altered service
  • Functioning voice prostheses should not be replaced however old
  • Central leakage should be managed by thickened fluids or plug first
  • If TEP fistula closing a new prosthesis should not be inserted
  • Prostheses may be reinserted to prevent aspiration but not for voice
  • If prosthesis requires changing consider a dummy valve which will avoid the risk of further central leakage until safe services are resumed.

Cyrus Kerawala

The National Tracheostomy Safety Project (NTSP_UK) has published some advice for laryngectomees and tracheostomees

NTSP Advice for patients with a tracheostomy in the Coronavirus pandemic

ENT UK Patient FAQ COVID-19                     March 30th 2020

Background

This document has been prepared in response to the numerous patient and professional queries received through social media and direct phone contact. It is intended to support the ENT UK documents produced and is aimed at the layperson. It is presented in a Q&A format.

Questions and answers

Q: I have a new cough but no other symptoms; should I isolate from the rest of my family?

A: Yes. As per present guidelines, you should self-isolate from rest of your family who should also be isolating at home as per present UK government instructions.

Q: I have lost my sense of smell but otherwise feel fine. Do I have COVID-19 and should I self-isolate from family?

A: It is reasonable to assume that the new loss sense of smell (anosmia) is COVID-19-related and you should follow guidelines for self-isolation from the rest of your family group.

Q: I have lost my sense of smell. When is it likely to come back?

A: Reports from other countries such as Italy seems to suggest that COVID-19-related loss to your sense of smell should return within 7-14 days. It is of course possible that the loss is due to other causes such as sinusitis, or other viral infections, but those also have good rates of recovery.

Q: I normally take nasal steroid sprays and have now lost my sense of smell. Can I continue taking them?

A: Yes, you can. There is some evidence that oral steroids can make the severity of COVID19 infections worse, so although oral steroids have previously been used in people with new symptoms of anosmia, we would not recommend these at the present time.

Q: I am a key worker without direct patient contact, but live with others with pre-existing conditions. Can I still go to work?

A: Yes, you can. As long as neither you nor any member of the household is experiencing any symptoms, you may go to work and observe all social distancing rules on your journey.

Q: If I think I have had COVID-19, can I stop self-isolating from family after 7 days, even if I don’t feel back to normal?

A: Yes, you can. However, if you have deteriorating symptoms, particularly increased shortness of breath, and you are struggling to breathe, you should seek medical advice via 111 or, if very unwell, presenting to hospital.

Q: I am meant to have an ENT operation. Will I still be able to have it?

A: Not at the present time. Most, if not all, elective operations have ceased for the time being so unless you are due to have a cancer-related operation, it is very likely that your operation will be postponed to a later date.

Q: I am meant to have an ENT outpatient appointment. Will this still go ahead?

A: Not at the present time. You may still be contacted by phone to have a virtual/phone consultation, but it is very unlikely that you will be attending clinic. If your appointment is cancelled, it will be rebooked for a later time.

 

Acknowledgements Thank you to Prof Carl Philpott and Prof Claire Hopkins, as well as the ENT UK executive committee for their input and guidance. References 1. ENT UK advice for patients with new-onset anosmia during COVID 2. Initial guidance for head and neck cancer management during Covid-19 Nara Orban Consultant ENT Surgeon Ass Hon Sec, ENT UK.

ENT UK at The Royal College of Surgeons of England 35-43 Lincoln’s Inn Fields London WC2A 3PE Tel: 020 7404 8373 | Email: entuk@entuk.org | Web: www.entuk.org

Laryngectomees and Coronavirus

 

NALC has sought assistance from its medical advisors to produce advice for our community in the difficult situation facing us, with a possible coronavirus epidemic.

SPECIFIC ADVICE

We want to highlight two essential ways the risk of contracting the virus can be reduced. Laryngectomees differ from others with the only route into the lungs being through the stoma.

  • Laryngectomees should make use of a heat and moisture exchanger (HME) to cover the stoma. There is a variety available, including some with sophisticated filtration properties, such as the Provox Micron.
  • The advice from Public Health England (PHE) about hand washing should be followed carefully (see below). Occluding the stoma to allow for valve speech usually involves use of the hands and there may also be a need during the day to use the hands to remove the HME to clear mucous from the stoma.

GENERAL ADVICE

  • Avoid touching your eyes, nose, mouth or stoma area as much as possible. It may take practice, touching the face is often done inadvertently.
  • Wash your hands regularly through the day with soap and water for around 20 seconds or use alcohol-based hand gel.
  • Stop shaking hands or kissing as a greeting. It is also thought keeping a distance of around 2 metres from others reduces the chance of infection.
  • The benefits of using a face mask are not clear, except that if an infected person wears one the risks of spreading the infection are reduced.
  • Cover coughs and sneezes with a tissue or your elbow.

IF YOU FEEL UNWELL – updated regularly

If you live alone stay at home for 7 days if you have either:

  • a high temperature – you feel hot to touch on your chest or back
  • a new, continuous cough – this means you’ve started coughing repeatedly
    Do not go to a GP surgery, pharmacy or hospital.
    (Please see post on March 30 with ENT-UK about other symptoms)

If one person in a household displays symptoms the others also need to isolate but for 14 days, to allow time for symptoms to show.

  CONTACT NHS 111 online if

  • you feel you cannot cope with your symptoms at home
  • your condition gets worse
  • your symptoms do not get better after 7 days      111 Online

Telephone call 111 if you cannot get help online.

OTHER

  • If you take regular prescription medication ensure you have a good supply.
  • It has been recommended that some people isolate themselves, for example if they have been in contact with someone diagnosed with coronavirus. To do this a two week supply of food would be needed, but no more than this.

The American physician, and laryngectomee, Dr Itzhak Brook has written about coronavirus on his blog

BLOG

Using Artificial Intelligence To Aid Radiotherapy

Northampton General becomes first hospital to treat head and neck cancer using artificial intelligence

 

artintellradio

Dr Craig Knighton looks at a treatment plan in progress Credit: Northampton General Hospital

Radiotherapy patients at Northampton General Hospital are among the first in the UK to be benefiting from the use of artificial intelligence. It’s being used to determine the best treatment for head and neck cancer, a particularly complex area to treat due to the proximity of radio-sensitive organs like the face, spine and brainstem.

The revolutionary software, called ‘RapidPlan’, learns from the last 100 treatments at Northampton General to generate an individualised plan for new patients.

Not only does this new way of working provide patients with the best possible treatment for their needs, but with minimal human interaction, it saves time. Before this, clinicians and medical physics staff would have spent time analysing scans to decide on a treatment that satisfies the many rules for a plan.

“Using this new technology gives our clinicians instant access to the information stored in previous treatment plans, to generate high quality treatment plans in a reduced timeframe. This will allow shorter waiting times and increased numbers of patients treated.”

– DR CRAIG KNIGHTON, CLINICAL DIRECTOR OF ONCOLOGY AND HAEMATOLOGY

The hospital hopes the new system, made by the company Varian, will help create more consistency across departments. Staff are also looking to create a supermodel for radiotherapy treatment across the country.

(From an ITV report)

Patient Experience Surveys

ncpes

How do head and neck patients fare in comparison with others?

Head and neck cancer is considered a “rare” cancer. Because the patient numbers are low compared to say breast or prostate cancer it can be difficult to gather meaningful information because sample sizes in surveys are too low.

The National Cancer Patient Experience Survey has been running for some years and the latest included returns from almost 2000 head and neck patients. Even so, results for our patients from individual trusts are problematic due to the small sample size for each and little information is available. Statistically significant results are only presented for the whole country.

Care is needed in comparing the experiences of patients having different cancer types. Differences in the care pathway, including preferred treatment modalities, will lead to differences in the response to particular questions in the survey. However some interesting differences are evident in the results. Looking back at previous surveys as well, the same differences have been seen in previous years.

When asked about the time between them noticing something suspicious to consulting a GP, 8% of head and neck patients reported a delay greater than 6 months. 3% of breast cancer patients gave the same answer.

A similar divide was seen after the visit to the GP. For 18% of head and neck patients it took 3 or more GP visits to get a referral to a hospital but just 3% of breast cancer patients needed this many.

When asked if they were given written information about their cancer, in a form that was easy to understand, 50% of head and neck patients responded positively. The corresponding figures for prostate and breast cancer were 74% and 70%.

These differences do not necessarily reflect failings in treatment and care; they will also result from the varying challenges of dealing with cancer at different tumour sites.

For patient support and advocacy groups, the results of the survey are valuable in assessing priorities and from the examples above raising awareness about head and neck cancer stands out.

The NCPES provides valuable information and would reward deeper analysis than presented here. I do hope the NHS will continue to fund this work and it does not go the same way as the head and neck audit (DAHNO) and vanish.

Link to Full Survey Results