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Louise’s Check In #2

Posted: 01.05.20

As we enter a new month living with the very unwelcome Coronavirus I just wanted to share some news and information that may be useful for our Niemann-Pick families. Last week I talked about how hospital admissions for anything unrelated to Covid-19 are low, Accident and Emergency departments are eerily quiet and both medical groups and charities have been urging everyone to seek medical attention when necessary and not to delay in doing so. This week, there has been concerns that cancer diagnoses and treatments may be delayed when patients don’t get in touch with their GPs as normal if they have any unusual or suspicious symptoms. New research, from University College London (UCL) and Data-Can, a health data research hub for cancer diagnosis and treatment in the UK, is the first to quantify the potential impact of the NHS delaying many forms of cancer treatment, including diagnostic tests and operations, and of people not wanting to risk going into hospital in case they become infected. This research estimates that almost 18,000 more people with cancer in England could die after the coronavirus pandemic as a result of hospitals suspending treatments and patients not seeking timely NHS care. In many areas where cancer services have been suspended they are now resuming, as there is capacity in the NHS to manage these services and to treat Covid-19 cases.

There has also been some discussion in the media, following a press question at one of Downing Street’s daily briefing sessions, on a possible link between children with Coronavirus and the extremely rare Kawasaki Syndrome. Information on Kawasaki Disease and its symptoms can be found here

The Royal College of Paediatrics and Child Health (RCPCH) commented that whilst a very small number of children can become severely ill with Covid-19 this is very rare. They added that clinicians are learning all the time about new diseases such as Covid-19 and need to be aware of any emerging evidence of particular symptoms or of underlying conditions that may make people more vulnerable to this virus. The RCPCH’s advice remained that children are unlikely to be seriously ill with Covid-19 but if they are concerned about their children’s health for any reason, they should seek immediate help from their GP, NHS 111 or nearest Accident and Emergency Department. Parents of children with a Niemann-Pick disease should follow this advice but can always speak to our Clinical Specialist Nurse Laura Bell for reassurance on non-urgent matters on 07791499555.

We are all looking at ways to stay in touch with family and friends that we are unable to see during this period of lockdown and at NPUK the team has become used to getting together virtually on Zoom and Microsoft Teams. If you are struggling with new ways to communicate, you are not alone, but there is plenty of support out there to help you.

BT and ITV have teamed up and created a series of guides to help families and friends stay connected and learn about the different types of technologies out there. You may have seen some of their adverts on ITV and you can catch up with all of their tips on . We recently heard from AbilityNet, an IT Charity that operates throughout the UK to provide all levels of support and training to those who have a disability and the elderly. They are offering remote support now to help people use IT to improve all aspects of their quality of life, be it staying in touch with others, setting up special programmes for the visually impaired or even by giving free lessons to help those that need to use online services to access, for example, Universal Credit. If you think AbilityNet could help you, please contact them on 0800 269 545 or have a look at what they offer on their website

Since lockdown, the NPUK team have been holding a weekly topical webinar on Zoom at 11, giving everyone a chance to sit down with a coffee and catch up with friends. Last week we were thrilled that our friend and counsellor Tony Somers, who some of you may have met at recent Annual Family Conferences, could join us to talk about Emotional Resilience and Wellbeing at this difficult time. If you missed the webinar and want to catch it, the recording is available….. If you or your family feel you would benefit from a free block of individual counselling sessions with Tony to support you at this difficult time, please get in touch with us at and we will organise this for you. This Wednesday we are going to catch up with our trustees at 11 so if you have any questions for them please do join our Zoom meeting 730 223 771 and Participant ID: 235700. If you haven’t used Zoom before, it’s a great opportunity to do so. Please get in touch with us beforehand if you would like to use Zoom but want a bit of help.

Last week we launched our Covid-19 Emergency Response Fund to help any of our Niemann-Pick families struggling financially or emotionally with the impact of life in lockdown. We are pleased to report that we have already been able to help some families at this difficult time. For example, we funded a new games controller for Harley-John after his mum Mandy told us how he was struggling with not being able to get out and about as normal. The application form is very easy to complete and you can find it 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 are processed as quickly as possible.

We have heard that some families who are eligible under normal circumstances for Free School Meals are experiencing huge problems accessing vouchers for food shopping that can be redeemed in certain stores and online. The government appointed Edenred to administer this voucher scheme during the Coronavirus crisis to prevent children going without the breakfasts and lunches they would normally have at school. However, the BBC has reported that some of the 1.3 million families eligible are struggling to use Edenred’s website or find places to use their vouchers and many schools and local foodbanks have been stepping in to prevent these children going hungry. If you are having any problems accessing Edenred vouchers and are being offered no local alternatives, please do get in touch with us at NPUK for support. We have also heard that due to demands on services and carers being off sick or isolating, some local authorities may be reducing the amount of care and support they are giving to those in need. Again, if this is something that is affecting you and your family, please get in touch with us at NPUK on 0191 415 0693.

As ever, during this unchartered time, if there is anything we can support you with, please do get in touch with any of us at NPUK.