British Inherited Metabolic Disease Group (BIMDG)
Below is the latest advice for those living with an inherited metabolic disease published by the British Inherited Metabolic Disease Group (BIMDG):
Prior to the next planned lockdown (starting 5 November 5 2020), the latest government guidance on COVID-19 identifies two groups of people who are more at risk of complications if they develop the infection and has provided advice for these groups:
1. Clinically vulnerable people are those who are:
· aged 60 or over (regardless of medical conditions)
· under 60 with an underlying health condition listed below (that is, anyone instructed to get a flu jab each year on medical grounds):
· chronic (long-term) mild to moderate respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis
· chronic heart disease, such as heart failure
· chronic kidney disease
· chronic liver disease, such as hepatitis
· chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS) or cerebral palsy
· a weakened immune system as the result of certain conditions or medicines they are taking (such as steroid tablets)
· being seriously overweight (a body mass index (BMI) of 40 kg/m2 or above)
The advice for clinically vulnerable people is that they:
· should be especially careful to follow the social distancing (and lockdown) rules and minimise their contacts with others
· should continue to wash their hands carefully and more frequently than usual and maintain thorough cleaning of frequently touched areas in their home and/or workspace.
· wear a face covering in indoor settings where social distancing may be difficult, and where they will come into contact with people they do not normally meet.
2. Clinically extremely vulnerable people will include those with an inherited metabolic disorder and with one or more of the following issues:
· Treatment with immunosuppression therapies sufficient to significantly increase the risk of infection
· Significant neurological impairment which includes difficulty swallowing, impaired ability to cough or clear the airway
· Decompensated liver disease
· A previous solid organ transplant (e.g. heart, liver, or kidney)
· Significant renal failure – on dialysis or chronic kidney disease (stage 5, eGFR < 15 ml/min)
· Long-term life dependency on ventilation – either via tracheostomy or CPAP/BiPAP
· Severe lung disease (eg. requiring supplemental home oxygen)
· People who have, or are undergoing treatment for, some specific cancers (see full guidance below for details)
· People who have had a bone marrow or stem cell transplant in the last 6 months or who are still taking immunosuppression drugs
· Women who are pregnant with significant heart disease
· Brittle / poorly controlled disease with frequent hospitalisations for management of severe metabolic decompensation
· Other patients with complex disease or multiple co-morbidities deemed clinically extremely vulnerable by their metabolic centre.
Any individual patient who feels they have been put on the clinically extremely vulnerable list in error, or who feels they may have been omitted from this list in error should contact their treating metabolic centre directly for advice.
Key points for individuals who are deemed ‘clinically extremely vulnerable’ and their families / household members:
· Clinically extremely vulnerable people are advised to stay at home as much as possible, except to go outdoors for exercise or to attend essential health appointments. We urge people to continue to seek support from the NHS and other health providers for existing health conditions and any new health concerns.
· People in this group may wish to meet up with one other person from outside their household or support bubble, for example, to exercise in an outdoor public place, but it is suggested that they always try to do so as safely as possible.
· People in this group are strongly advised to work from home. If they cannot work from home, they are advised to not attend work for this period of restrictions. People in this situation may be eligible for Statutory Sick Pay (SSP), Employment Support Allowance (ESA) or Universal Credit. Letters are being sent to people who are clinically extremely vulnerable which may act as evidence in accessing this support.
· Most children originally identified as clinically extremely vulnerable no longer need to follow this advice. People should speak to their GP or specialist clinician, if they have not already done so, to understand whether their child should still be classed as clinically extremely vulnerable.
· People in this group should avoid all non-essential travel by private or public transport. This includes not travelling to work, school, the shops or pharmacy. They should ask others to collect and deliver e.g. medicines and shopping - seeking support from friends, family, or a volunteer, including NHS Volunteer Responders.
· These new measures will apply nationally for 4 weeks up to 2 December.
· Other people living in a household with someone who is clinically extremely vulnerable are not advised to follow this guidance.
· NHS Volunteer Responders can help with shopping and medicines delivery, as well as a regular, friendly phone call and transport to and from medical appointments. Call 0808 196 3646 between 8am and 8pm to arrange support or visit NHS Volunteer Responders.
· DHSC are writing letters to everyone currently on the Shielded Patient List (SPL) to make them aware of the new guidance. We expect these to arrive with patients from mid-week this week.
Current Government Guidance:
Guidance from other specialist groups:
Guidance from the Royal College of Paediatrics and Child Health: https://www.rcpch.ac.uk/resour...
Guidance from kidney care UK: https://www.kidneycareuk.org/n...
Guidance from the British Liver Trust: https://britishlivertrust.org....
Guidance from the British Lung Foundation: https://www.blf.org.uk/support...
Guidance from the British Heart Foundation: https://www.bhf.org.uk/informa...