Update from the adult LSD clinical centres on clinical support and homecare (updated 17 April)

Updated: Apr 24, 2020

Please find below some updated information from our adult clinical centres.

The clinical centres are working tirelessly to manage the huge volumes of calls and enquiries from our patient communities. For many, they have had to either cancel all clinics and non-emergency appointments or move them to telephone appointments. These are unprecedented times and many of our doctors and nurses have already been, or are on standby, to be called to the front line.

Each centre has an answerphone to ensure that they do not miss any calls. Please bear with them as they filter through the many calls that are coming through on a daily basis.

The current advice is that critically ill LSD patients should not be transferred to the specialist centres and should continue to receive treatment at their local hospital as appropriate. Advice and support should be sought by your specialist centre as required. Keep to hand:

  • your specialist centre telephone numbers

  • any medical alert cards

  • care plans or leaflets for medical staff that explain your condition.

Speak with your closest family members and advocates to ensure they know where information is kept.

Please be aware that advice is changing regularly and it is important that you keep yourselves up to date with the latest government advice.

Extremely vulnerable patients

Clinical centres have now reviewed all their patients and will have contacted those patients deemed to be 'extremely vulnerable' and discussed shielding if appropriate. You more advice on shielding visit this government site.

We are aware that many patients may have received a letter or text to suggest that they were extremely vulnerable – as various NHS lists were used centrally to generate these lists. If you have received a letter that you do not feel is appropriate for you, or has not come directly from your LSD team, then please don’t hesitate to contact your LSD team to discuss this further.

Social distancing

Social distancing measures are steps we should all be taking to reduce the social interaction between us. This will help reduce the transmission of coronavirus (COVID-19). Please use the government website link below for up to date information. Please see the government website for up to date information.

Self-isolation – if you are symptomatic or unwell or someone you live with is symptomatic (with COVID-19)

In this instance you should self-isolate at home. Please visit this NHS site for self-isolation advice.

Homecare/enzyme replacement therapy (ERT) infusions

Patients who are not shielding

Patients who are not shielding should be able to receive their infusions as normal. You will be contacted by your clinical centre or homecare provider, to discuss this. If you are concerned about the risks to you or other family members, please discuss this with the homecare company or your clinical centre before the nurse is due to visit. Please be advised that they are also receiving a high volume of calls and may not be able to answer you straight away.

Patients who are self-isolating due to illness thought to be COVID-19 related

If a patient is self-isolating (this includes isolating due to another member of the household presenting with COVID-19 symptoms), then nurse visits for ERT infusions are paused for the duration of self-isolation. You should inform your treatment centre if you are self -isolating and let them know also when you resume infusions.

Independent ERT users 

For patients, parents or carers who independently give infusions, your treatment can continue. Please see this website for measures you will need to take in respect of deliveries (this is currently being updated).

Becoming semi- or fully-independent in giving ERT infusions