Can we have some clarification regarding Parkinsons and Coronavirus. Parkinsons UK briefing paper dated 18/3 suggested that the government would be issuing an update on what they are now calling “shielding” and that you “expected” that PD sufferers would be on the list of “extremely vulnerable” people.
When interviewed earlier this afternoon the MP Robert Jenrick mentioned that PD was included. However at the 5pm press conference it was not referred to and the government briefing issued online after the conference makes no mention of PD in the list of “extremely vulnerable” categories. We need urgent clarification as it is extremely upsetting as “shielding” will mean 1.7m people being effectively locked in their premises for 3 months
Parkinsons UK guidance suggests that a PD sufferer does not face a greater risk of catching coronavirus than anyone else but do have an increased risk of severe illness if they catch coronavirus
I’m confused and bewildered by the two Government briefings on social distancing and shielding for extremely vulnerable people and their relevance regarding those with PD
The social distancing advice seem to indicate that people with PD are vulnerable and should avoid contact with family and friends without saying for how long. It also appears to allow sufferers to leave the house for walks so long as the 2 metre “advice” is heeded. Guidance though is unclear as to visiting supermarkets and pharmacies.
The shielding advice indicates that those classified as “extremely vulnerable” should stay at avoid face to face contact and stay in the home for 12 weeks. There is though no reference to PD in the extremely vulnerable group. It also states that it is the extremely vulnerable person’s choice as to whether to follow the measures. It also says there is no need for the partner of an extremely vulnerable person to shield
I completely understand your concern and confusion.
As advised on our website, Parkinson’s is not listed as a condition in the extremely vulnerable group following the governments recent announcement yesterday. And yes, the advice for people with Parkinson’s is to continue to follow strict social distancing instructions, however, if you need more clarification on this, please contact our helpline on 0808 800 0303 or email us at [email protected].
Hi. I understand the advice but I don’t know how to implement it. I live on my own and I have to eat and get prescriptions. Friends are trying to help but they also need to feed their own families and look after their own elderly relatives. There’s no offer of delivery by chemists near me as they are all totally overrun therefore I’ve had to go to the chemist twice for my Parkinson’s medication since last Friday because the GP didn’t send it through when they said they would the first time - I know they’re really busy- and the chemist had forgotten to order enough when I went in today so I have to go back again this Friday. I am fearful that my status as somebody with Parkinson’s will impact on my access to treatment should that situation become necessary and if things get as bad as we are being told that they could, then I don’t fancy my chances of getting my medication in hospital should I end up there anyway. I’m therefore trying to do the sensible thing and avoid getting ill but I don’t know how. All appointments have been understandably cancelled and support services are overloaded so I have no idea who to talk to or get practical advice from in my local area. I know I’m not alone in this situation, people with any number of chronic conditions are queuing outside the chemists to pick up medication for elderly parents and some of them have children with them as well because they have no choice, but knowing this doesn’t make it any better. I really don’t know what to do.
I work in the refuse collection service for a council advice confusing don’t know if I should be going in to work they say pd suffers at no greater risk of catching the virus but if you get it could be seriously ill not sure what to do confused and stressed any advice would be appreciated thank
Hi,
I’m no expert but this caught my eye because I’ve discussed this a lot with my sister and her husband who are also in essential services and are struggling to get concrete advice so it’s been on my mind.
Sorry not to be of more use but just a few personal thoughts and observations:
As I understand it, and do check because I could be wrong, below is a link to the NHS advice document regarding NHS staff in the most vulnerable and vulnerable groups as defined by a potential increased risk of becoming seriously ill if coronavirus is contracted. I’ve only included it because if this is what the NHS is advising for its own staff, it seems reasonable to assume that it is worth having a look at.
I’ve read it a few times and I’m afraid it’s horribly vague with lots of reference to self help, signposting and actions being taken ‘wherever possible’.
I have followed up quite a lot of the self help links on various advice websites; some are useful but sadly, a significant amount of the advice being given is not possible to take on board due to the ever-changing, and occasionally confusing, nature of NHS and Government information and the realities of life for many people.
I would try contacting PUK’s helpline and I would also definitely contact your GP or any specialist support that you can access at the moment to discuss your specific circumstances and associated risk factors and get advice particular to your own situation.
I have to think that the ‘vulnerable’ category covers such a wide range of conditions, with people at all stages of each condition and also at different ages and with different levels of general health and varying comorbidities that it is impossible to make blanket rules to manage this so it may well be that focusing on your specific situation -including your symptoms, any other health conditions and general health - is the best way to approach this. I’m guessing that you’ve discussed your situation with managers to discuss any options that they can offer?
Is it a confusing and scary time at the moment and I feel for everybody in services deemed to be essential.
I hope you find a resolution that keeps you as safe as possible.
Take care.
J
This is unchartered territory for us all so I completely empathise with you and I understand why you might be finding it difficult to implement the advice on our website. The best advice I can give you is to contact our helpline for support during this very challenging time as they’ll be able to address your concerns in more detail.
Do give us a call on 0808 800 0303 or email us at [email protected].
Yeah the latest PD UK guidance dated 23rd March is extremely confusing. in one breath it says that “Parkinson’s is not listed as a condition in this [extremely vulnerable group” who will be subject to “shielding” and implies that my wife will not get a letter, yet then lists all the things that shielding implies and says that PD sufferers should follow this. i thought social distancing was all that was required now i am completely confused.
Hi Reah, I hope this message finds you well because I do understand that this is an incredibly challenging time for everybody. I contacted the helpline this morning and spoke to somebody who was very lovely but only has the same information that I do really and I guess that’s the problem, there’s a great deal of uncertainty all round.
The government are sending out text messages telling people to stay at home but I think these are going to everybody irrespective of health status because the link in the text takes you to the generic advice for everybody. If I’m correct, there’s going to be a level of confusion around this and if I’m incorrect I’d be grateful for any additional information.
I keep reading that I am at more risk of developing complications because I have Parkinson’s but I don’t understand why and what the risk is and my biggest fear is that treatment decisions, should the situation get very bad, could be based on my status as somebody with Parkinson’s Disease. This probably isn’t the case as I do tend to go straight off the top of the ladder when I get stressed, therefore missing all the rungs on the way up, but in the absence of any clear information as to what I’m being advised to do, I have to go out to get food and medication because I live alone and there is nothing in place in this area to support with prescription deliveries or home deliveries of food for people in the health related category that I think I fall into. I can’t wipe things down with disinfectant wipes because I can’t get any and I can’t avoid social contact when I have to keep going to the chemist to try and get medication.
I do understand that many, many people are in the same boat but my frustration is that I don’t understand the level of risk I am at because I don’t understand what ‘complications due to Parkinson’s’ looks like in terms of Coronavirus and I’m not totally clear on the impact of being classed as somebody who is ‘vulnerable’ in terms of receiving healthcare should I fall particularly ill. If I knew these things, I could make a decision as to whether it would be preferable to live off water and lentils for the next few weeks (or even just water if things get bad) but I don’t know the answers to these questions and I feel in total limbo in terms of making informed decisions based on the unclear advice that I have - much of which I cannot follow if I am to stock up on food and medication as advised. :-S. Jx
Hi Reah,
I forgot to say thank you to both yourself and everybody trying their best at Parkinson’s UK to support us in understanding what is happening in these unprecedented times. I’m capable of moaning a fair bit :-S but I do need to remember to say thank you as well and I realise that everybody at Parkinson’s UK will have relatives and family that they will be worrying about as well as their own health to consider so I really just wanted to say thank you.
Jx
I truly empathise with you and I definitely understand your confusion. As you said, this is a challenging time for us all and we’re trying our best to keep pwp as informed as we can on what’s best for their health in line with government instructions. As soon as we receive more information and clarity, we will update the community.
Please take care and do continue to use the forum to communicate with other people during this time.
I have contacted the helpline regarding my concerns I explained our situation and they agreed that the advice being given was confusing and contradictory but explained that because of the multiplicity of Parkinson’s symptoms they could not give specific advice to every sufferer but advised me to follow the “lock down” instructions but be especially diligent in adhering to social distancing and the 2 metre rule.
I’m glad you spoke to our helpline. The best thing to do at this stage (until we learn more) is to follow the lock down instructions as you’ve noted in your comment and to continue using the forum as a way to remain social and to keep up to speed with info on corona virus and what it means for pwp.
I agree davech, very contradictory advice. Please PUK get some expert advice yourselves and give us all the lowdown. Don’t be like most politicians and not answer the question, just fudge it or avoid it or refer elsewhere.
