Information for People living with Fanconi Anaemia

Update 7th July 2020.

The Government has again updated its shielding guidance – announcing that the majority of children currently considered extremely clinically vulnerable to COVID-19 will be able to be removed from the shielded patient list. You can see the full guidance here, and the associated press release here.

The Government has said this change has been made as evidence from paediatric clinicians shows COVID-19 poses a low risk to children and young people.

  • Majority of children currently shielding to be told by their doctor they will not need to do so in the future
  • Only a small group of children with certain medical conditions are likely to be advised to shield if shielding needs to be reintroduced in the future

Children will only be removed from the shielded patient list by their GP or specialist doctor following consultation with the child and their family. Specialists and GPs will be asked to contact children and their families to discuss this over the summer, so families do not need to take any immediate action.

A small group of children who receive specialist care in hospitals may need to carry on shielding following a consultation with their doctor. This includes those receiving cancer care or those at risk of severe infection due to an immunodeficiency. Children who were initially identified as being clinically extremely vulnerable but no longer required to shield include those with conditions such as asthma, diabetes, epilepsy and kidney disease.

From Saturday 1 August, the guidance will then be paused so clinically extremely vulnerable people of all ages will no longer be advised to shield

Update 23rd June 2020:

As many of you will be aware, the Government yesterday published plans to ease shielding guidance for over two million people. From Monday 6 July, people currently shielding from coronavirus will be allowed to meet with up to 6 people outside and form a ‘support bubble’ with another household, in line with government advice for the wider population.

The shielding support package will remain in place until the end of July, when people will no longer be advised to shield. Support will still be available from NHS volunteers and local councils, and people will retain priority for supermarket delivery slots, and be able to access help with shopping, medication, phone calls and transport to medical appointments. The NHS Medicines Delivery Service will still run from community pharmacies and dispensing doctors, where family, friends or volunteers cannot collect them.

The NHS will maintain the Shielded Patient List to ensure that it continues to provide advice to those identified as clinically extremely vulnerable.

In addition, from 1 August, those who need to work and cannot do so from home will be able to return to work as long as their workplace is ‘COVID secure’.

Updated guidance will be published on 6 July and 1 August as the stated measures come into force.

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Update 20th June 2020: Government guidance for people who are shielding  changed on 7th June to take into account that COVID-19 disease levels decreased over the previous few weeks. Their advice, which is advisory only, is that:

“People who are shielding remain vulnerable and should continue to take precautions but can now leave their home if they wish, as long as they are able to maintain strict social distancing. If you choose to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household. Ideally, this should be the same person each time. If you do go out, you should take extra care to minimise contact with others by keeping 2 metres apart. This guidance will be kept under regular review. 

Read further information on schools and the workplace for those living in households where people are shielding.”  Read more from the Government website

A further Government update is due in the week commencing 22nd June.

A good source of current information for people with genetic conditions is the COVID section of the Genetic Alliance website. This provides advice separately for England, Scotland, Northern Ireland and Wales.

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As COVID-19 is a new virus, there is very little known and understood yet about the implications for people living with Fanconi Anaemia. Increasing amounts of data are being collected and analysed but it will be some time before the medical and research communities have answers. Until then, we must err on the side of caution to minimise the risks to people with FA, so the view of medical trustees of Fanconi Hope is that the safest course of action is that all people with FA should adopt the current Shielding Advice recommended by the UK government.

What is known is that based on data from China, COVID-19 is mainly an adult disease, with only 2% of 44,672 confirmed cases being under 20. It is very often a mild disease and again from the Chinese data, of the 44,672 cases, 81% were mild.  The number of mild cases is itself probably an underestimation as many mild cases may never have been tested. Data from COVID-19 hospitalisations in Belgium shows that 27% had no underlying conditions and 6% had diseases of the immune system or haematological cancer such as leukaemia. At the University Hospital of Wuhan, about 0.8% of cancer patients had COVID-19, versus 0.4% from the general population.  (All information from COVID-19 and me: an EBMT webinar for patients and caregivers 3/4/20)

In a webinar by Dr Sujith Samarasinghe, a paediatric haematologist from Great Ormond Street Hospital on 24/3/20, he said that he was not hearing that children with immunodeficiency were getting serious COVID-19 symptoms. There had been no incidence of severe symptoms with leukaemia or aplastic anaemia patients in Italy and in the whole of the EU there were only 2 cases of coronavirus in leukaemia patients and none with aplastic anaemia patients.

We have been in touch with many of our European counterpart FA support organisations and as far as they are aware, no cases of COVID amongst people with FA are known in the UK, Germany, the Netherlands, Italy or Spain. There is one possible case in Denmark and one known case, an FA adult many years post-transplant, in France. In France also, doctors have observed that people with immune deficiency don’t seem to have a higher risk of developing Covid-19. However we should not read too much into this, as part of the reason may be the fact that many FA patients will have taken much greater care to protect themselves in the first place and many will have been through the self-isolation process of bone marrow transplantation previously, giving them much better appreciation of the infection protection regimes required.

Given that so much about COVID-19 is not yet understood, the view of medical trustees of Fanconi Hope is that the safest course of action is that all people with FA should adopt the Shielding Measures recommended by the UK government. Whilst not all people with FA will be at the same level of risk, there are still too many unknowns to give guidance to give people individually.

You may have received an NHS letter saying that you are in the UK government’s extremely vulnerable category, making you eligible for additional support and giving guidance that shielding measures should be adopted. If you have FA and have not received a letter, you can register with the UK Government here and tell them whether or not you need support. You should then contact your GP to keep them informed. As the process still seems to be a little fluid, it may be that you need to contact your GP first before registering on the UK Government site.

Please note that GP or hospital clinicians looking after people in these groups have now received letters informing them of the highest clinical risk group and have been asked to review their patient lists and to add in any patients they think should be on that list, so again, if you are not on the list, please contact your GP.

It appears that some people with FA have been sent letters and some have not. Of those who have, some are many years post-transplant, some of whom are immuno-suppressed, and some who are not. Being on the Government’s ‘extremely vulnerable’ list may confer certain advantages in that you may be able to receive preferential treatment from chemists in terms of home delivery of medicines and from supermarkets in relation to online delivery slots for example. If you are on this list you should then receive a further letter from the NHS which states that the letter itself is evidence for your employer to show that you cannot work outside your home.

New UK Government guidance you should read was published on 1st April

Caring for people at highest clinical risk from COVID-19 Background and FAQs for patients

Read about what Shielding entails here.[/vc_column_text][vc_separator sep_color=”color-jevc”][vc_column_text]Please note:

  • If, at any point, you think you have developed symptoms of coronavirus, such as a new, continuous cough and/or high temperature (above 37.8oC), seek clinical advice using the NHS 111 online coronavirus service (If you do not have access to the internet, call NHS 111. Do this as soon as you get the symptoms.
  •  Most routine appointments are being cancelled, so if you need urgent medical attention you should contact your care team.

Mental Health and Wellbeing

 

It is important to ensure the mental health and wellbeing of everyone who is self-isolating for 3 months or more. Here are some useful Mental Health and Wellbeing websites

Educational Resources

 

Here are some predominantly free Online Educational Resources but parents should check these sites for suitability first.

Further  Useful Information

 

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