—————–Update: 8th October 2020 —————-

Since our last update, the picture across the country is changing rapidly. Each home nation now has its version of advice and regulations that need to be reviewed before making any decisions on when and if you mix with others or go to work etc. To find out how you are affected by these new regulations, please head to this site and enter your postcode.

Shielding advice also changed in July. The UK government is currently advising anyone who previously had to shield due to health issues now no longer need to. This includes areas with local lockdowns. They do, however, urge people to take the necessary precaution not to put themselves in any unnecessary danger. More information on shielding can be found here.

Although open for patients for a one month, two NAC weeks, after the relaxing of lockdown, the NAC has now had to close due to a local lockdown in Merseyside. The closure of the NAC will be reviewed on a month by month basis. Any patients who are affected by this will be notified by Lesley Harrison, our head of patient support and welfare. If you are concerned, you can also email lesley@akusociety.org

—————–Update: 24th June 2020 —————-

The Government has published plans to ease shielding guidance for over two million people. From Monday 6th July, people currently shielding from coronavirus will be allowed to meet with up to 6 people outside and form a ‘support bubble’ with another household, in line with government advice for the wider population.
The shielding support package will remain in place until the end of July, when people will no longer be advised to shield. Support will still be available from NHS volunteers and local councils, and people will retain priority for supermarket delivery slots, and be able to access help with shopping, medication, phone calls and transport to medical appointments. The NHS Medicines Delivery Service will still run from community pharmacies and dispensing doctors, where family, friends or volunteers cannot collect them. The NHS will maintain the Shielded Patient List to ensure that it continues to provide advice to those identified as clinically extremely vulnerable. For more information please head to the Government website. 

Updated guidance will be published on 6 July and 1 August as the stated measures come into force, and we will keep you updated.

The AKU Society has been receiving a lot of questions in regards AKU and COVID -19 (Coronavirus).  In these trying times, trusted information is extremely important. That is why we have asked our healthcare partners to explain some of the most common questions.

Whether or not AKU patients would be at increased risk compared to the rest of the population, we simply don’t have the science/ knowledge to give an evidence-based answer.

AKU is a multisystem disease mainly damaging the musculoskeletal system and the aortic valve. There is nothing to suggest that the immune system is impaired in AKU per se.

There is a suggestion of an increase in all infections after nitisinone treatment in AKU, especially early after starting treatment. This was an unexpected finding in the SONIA 2 clinical trial (which is currently being considered for publication and therefore cannot be discussed further here) and most of the infections reported were minor.
Nevertheless, it is necessary to inform people about this potential finding, as we agreed with the regulators when the trial was being set up.

Most AKU patients with aortic valve involvement have normal heart function with no heart failure or compromise of the pulmonary system, and therefore they probably should not be considered as having significant heart disease increasing their risk to COVID-19.

Severe damage and immobility of the spine and the thoracic (rib) cage, as it can potentially impair breathing, could make for slightly increased health risk especially when advanced.

Furthermore, many of the AKU patients are either over 60 (and therefore fall in the higher risk category as per WHO situation report -51 or have other underlying additional chronic conditions that put them at increased risk anyway.

You can continue to take all medications you are currently on for pain and related AKU issues. The medications advised would be as per previous to the outbreak of COVID-19.

If any cold/ cough is a new issue, contact local healthcare for further guidance and support.

Public Health England advice on social distancing applies to everyone and there should be no doubt on the gravity of the situation we are facing and what everyone should do.

Nonetheless, if patients still have COVID-19 related concerns or are not sure what to do, they should approach their local GP, following the national advice. As always, the AKU Society team will be available to deal with any AKU related issues, for specific support and advice.

——Update 03.04.20———-

Since this blog was live, a few patients have asked us about anti-inflammatory drugs and how they react with COVID-19. The NHS updated information is:

“There is currently no strong evidence that ibuprofen can make coronavirus (COVID-19) worse.
But until we have more information, take paracetamol to treat the symptoms of coronavirus, unless your doctor has told you paracetamol is not suitable for you.
If you are already taking ibuprofen or another non-steroidal anti-inflammatory (NSAID) on the advice of a doctor, do not stop taking it without checking first.”

The author of the original post says:

It is important to remember that in AKU, pain relief is crucial to managing getting by on a daily basis. This is the context in which the usage of non-paracetamol pain relief medications comes into play. Physical measures, such as social distancing and protecting oneself, are probably just as, if not more important than stopping essential drug treatment.

The patients being looked after at the NAC have been repeatedly advised that non-paracetamol pain relief medications such as ‘Brufen’ group of drugs should be episodic – taken for a few weeks when pain escalates and then discontinue when it resolves. This advice is not just about COVID-19 but about safety in terms of cardiovascular risk.