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Louise’s Check In #3

Posted: 13.05.20

I hope everyone found a way to enjoy the Bank Holiday weekend and celebrate the 75th Anniversary of VE Day on Friday– albeit in a very different way than originally planned? I know from speaking to friends, family and neighbours, many of us were waiting to hear what the Prime Minister would announce on Sunday night, in his broadcast detailing plans on how the United Kingdom might plan to gradually come out of this lockdown period and reopen both the economy and society. Whilst the broad tests of protecting the NHS, seeing a sustained fall in the rate of deaths from Coronavirus, the challenges of getting hold of PPE and keeping the reproduction rate (known as the R) of the disease below 1 remain broadly the same, Prime Minister Boris Johnson set out tentative steps for the months ahead.

He outlined the new Covid Alert Level System, determined by the R and number of coronavirus cases, consisting of five levels, to which we all need to Stay Alert. The highest level of Covid Alert, Level 5, would be the most critical, with the NHS being overwhelmed– the kind of situation we fortunately have not experienced in the UK to date. Over the period of the lockdown, we have been in Level 4 and the Prime Minister introduced the cautious steps needed to move downwards towards Level 3, with the tentative opening up of more of the economy and unlimited amounts of outdoor exercise. More details of the Covid Alert System can be found here: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/884352/slides_-_11_05_2020.pdf

Some of the Prime Minister’s messages were further explained the following day when the UK Government published its more detailed Covid-19 recovery strategy: https://www.gov.uk/government/publications/our-plan-to-rebuild-the-uk-governments-covid-19-recovery-strategy

It also answered some of the many questions that had arisen since Sunday, especially relating to returning to work and what you could do outdoors and with whom here: https://www.gov.uk/government/publications/coronavirus-outbreak-faqs-what-you-can-and-cant-do

Many of our patients and families will rightly be wondering how these subtle changes affect them, as many are currently shielding until the end of June or being advised to stay at home and to only go out when absolutely necessary. The Government is taking a cautious approach to those, including many of our Niemann-Pick patients, who have been identified as being clinically extremely vulnerable and advised to shield or clinically vulnerable. The guidance on shielding and vulnerability will be kept under review in the coming weeks. The Government is monitoring the emerging evidence on Covid-19 and will continue to listen to its medical advisers on the level of clinical risk to different groups of people associated with the virus and will begin to offer more precise advice about who is at greatest risk over the months ahead. Linking in with this, the Clinical Reference Group on Lysosomal Storage Disorders, which include Niemann-Pick diseases, met on Monday to consider levels of risks to patients based on emerging evidence on the Coronavirus and their own expert knowledge about LSDs and will be looking at issuing more tailored guidance for patients with LSDs in the next few weeks. Until then, please continue to shield if you are in the most vulnerable group clinically and to stay at home and minimise social contact if you are in the second group of clinically vulnerable patients. If you have any questions relating to shielding or clinical vulnerability, please contact Laura Bell, our Clinical Nurse Specialist for Niemann-Pick Diseases on 07791499555

We know that some of our patients and their families are concerned about attending their regular clinic appointments and at the moment, unless you need to be seen in a hospital setting, clinics will be held over the telephone or by video conferencing, to minimise trips to hospital. However, some patients, including the newly diagnosed, will still need to be seen in hospital and different Specialist Centres and NHS trusts have measures in place to ensure these visits happen in a safe and timely way. Again, if you have any concerns about attending your Niemann-Pick clinic appointment, please speak to Laura. As in previous blogs, the clear message is the NHS is open for business, and should you have any health concern or emergency, please contact your GP, NHS111, 999 or your nearest Accident and Emergency Department in the usual way.