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Louise’s Check In #5

Posted: 12.06.20

Hi everyone,

I hope everyone is well as we start yet another weekend in lockdown – it seems a very long time since we entered this very strange phase on March 23rd.

Some of us may even have managed to enjoy a socially distant meet up in a garden or park with up to six friends or family now that we know that the Coronavirus spreads less effectively in the open air at a safe distance. I really enjoyed catching up with some friends in the garden before the weather turned distinctly chilly and most unlike how it should be in June. There has also been some good news earlier this week for those shielding in that they can now spend time outside with their household or meet up with one other person from outside their own household if they live alone, again outdoors. It can be hard to keep up with all the Government guidance but the latest information on shielding can be found here.

Patients that are shielding should continue to do so until at least 30th June 2020. However, as clinicians and scientists learn more about the spread and risk factors associated with Covic-19, more tailored, individual guidance on who should be shielding over the next few months will be issued shortly. The Royal College of Paediatrics and Child Health this week published new guidance on shielding for children and it is expected that guidance for adult patients to be published shortly will mirror the same format. Working with a wide range of paediatric specialist groups, including the British Inherited Metabolic Disease Group, the new guidance updates the original shielding list, which was published in the early days of the pandemic. Going forward, the guidance sets out two groups of patients – Group A who need to continue to shield and Group B who will require a case-by-case discussion to weigh up the benefits and risks of whether a child should continue to shield or not. NPUK patients should be contacted by their clinicians or specialist centres shortly but if anyone has any questions, having read the revised guidance, please contact Laura Bell, NPUK Clinical Nurse Specialist for more information. This guidance from the RCPCH is available to read, here.

There has been understandable anxiety among many people living with rare diseases such as Niemann-Pick disease about their level of risk from Covid-19 and the precautions they should take. Genetic Disorders UK recently let us know about a new interactive online tool for people with rare diseases to better understand their risk of Covid-19. Developed in collaboration between a team of clinical genetics doctors, the British Society for Genetic Medicine, the Clinical Genetics Society and Aimes (a healthcare IT company) the tool is a quick online questionnaire and is available here.
This does not replace the advice you get from your own specialist but could help open a conversation about your own Covid-19 risk, especially as we learn more about the Coronavirus and guidance on shielding becomes more individualised.

On Thursday the British Inherited Metabolic Disease Group, supported by NPUK and chaired by our very own Dr Will Evans, held a webinar looking at Covid-19 and the its impact on IMD patients. Reassuringly, we learnt that of the five children and eight adults with an IMD hospitalised in this country with Covid-19 none needed Intensive Care support, all recovered well and only one adult required intubation. The webinar also discussed the new guidance on shielding and how the NHS is getting ready to restore more services such as outpatient clinics. With social distancing likely to continue for some time yet, some clinics may still be held online or by telephone, although clinicians would strive to see newly diagnosed patients in a hospital setting for initial appointments if appropriate. Once again it was stressed that if anyone has any healthcare concern or emergency, please contact your GP, 111, 999 or specialist centre as normal. If you missed this useful webinar, you can catch it here.

NPUK will be discussing some of the aspects of how hospital services may look in the months ahead in our next #TimetoTalk webinar next Wednesday (17th June), as well as personal finances and sources of support as we know how difficult it can be to stay positive all the time during lockdown when we have so many worries about our families, jobs, finances and how to keep our children entertained and home-schooled. Early in lockdown NPUK and the Hollie Foundation launched the Coronavirus Emergency Fund to help those experiencing hardship or unexpected expense as a direct result of the Coronavirus pandemic. We have grants of up to £200 per family to support with financial hardship or unexpected bills (this could be, for example, food or household bills) and/or to help with emotional or physical well-being (examples could include play, educational or craft equipment, garden or exercise items). There’s a very easy form to complete on our NPUK website or available here or you can ring any of us on 0191 415 0693 for help completing the form over the phone. Completed applications can be emailed to and we will ensure grants reach those in need as quickly as possible.

Finally, Wellchild, the national charity which supports sick children and their families, have launched their own Covid-19 Direct Response Service to send Personal Protective Equipment (PPE) supplies direct to families (such as gloves, aprons, alcohol gel, scrubs for care staff) and to support them with any supplies they might need such as food deliveries or prescription collections. You can request help direct from Wellchild here or via any of the staff at NPUK.