If you have Long Covid and are looking for support then I hope you will consider looking within our group. We cannot really offer much by way of medical advice but we are a supportive community who will do what you can to see you get the support you need as well as giving you the support you need within the group. We also have links with local Clinical Commissioners and can do our best to see you get the support you need.
We have quite a few members with long covid including myself and if numbers and demand merit it we may even start some Long Covid specific sessions. Here though are some other places you can go for help. There is a separate post on symptom management links and resources here.
Before recommending anything though I want to actively warn people about one of the NHS sites that is out there Your Covid Recovery. I do not claim much by way of medical expertise, I have a Post Graduate Diploma in Person Centred Counselling and that is about as far as it goes in terms of medical qualifications ( its not a medical qualification). However the recommendations both on Fatigue and Getting Moving Again go against NICE Guidelines on Long Covid and seem dangerously ignoring the potential for Covid to have caused serious long term harm such as doing too much, too soon without adequate testing could do more harm than good.
Navigating What Support you Should Receive in terms of Diagnosis and Treatment
In terms of navigating what support you should receive I will stress that this is an emerging and developing area and I cannot promise to keep this up to date. So far:-
https://meassociation.org.uk/wp-content/uploads/Long-covid-and-MECFS-April-2021.pdf Dr Sheppard has done a good job of highlighting what tests should be carried out and why. As this was put together April 2021 it might well be that there is more up to date information but I found this helpful to explore what tests should be done rather than my experience with the NHS where it has felt like “OK this patient is being persistent lets order one random test and see if they leave us alone…And if they do not then it will be someone else’s problem probably when they come back if we cannot get the receptionists to chase them away”.
NICE Guidelines
https://www.nice.org.uk/guidance/ng188/chapter/Recommendations – less up to date but I find much easier to read. They are doing regular updates of this guidance so check there is nothing more recent before relying too much on these.
Asthma and Lung UK have put together some good resources on Long Covid. They have a questionnaire you can complete https://mylongcovid.org.uk/ and you can then have it emailed to you or printed out. It will highlight the issues you are experiencing which you can show your GP or other health professionals and also will give some advice and signposting to services that might help. It is a little too dependent on people choosing the severity of their issues on a simplistic sliding scale for my liking but still could be of use to quite a few people.
Assessment Services
https://www.healthystockport.co.uk/long-covid-support-in-stockport/stockport-long-covid-assessment-service-lcas This tells you a little bit about the Stockport Long Covid Assessment Service. It is not much information but it is all I have found in writing thus far. You can ask your GP for a referral. Note that there is a Greater Manchester wide approach to have a local Long Covid Assessment service modelled on a very similar approach so if you are in a different part of Greater Manchester just add your borough first when you ask for a GP referral.
This is the Trafford pathway but it is roughly the same across Greater Manchester and this is the only one that my Google-Fu could find. Warning it is really tricky to read and make sense of. I will try to find a more accessible overview. In fairness I do not think members of the public or ill patients are the target audience. Broadly speaking the Greater Manchester-wide approach is for a four -tiered approach to Long Covid with the first tier being billed as largely signposting and steering patients to a self management approach using resources such as Your Covid Recovery – see above
https://gmprimarycarecareers.org.uk/wp-content/uploads/Supporting-people-living-with-Long-Covid-in-GM-GP-Packv1i-002.pdf This highlights where things are in terms of Tier 1 of Long Covid support. I have many problems with this approach. I do think there is a lot of potential in for informal learning and peer support to be very effective in assisting people in managing their Long Covid. But as far as the resources in the NHS I have seen thus far they do not seem fit for purpose.
Peer Support Groups
There are two NHS facilitated peer support groups. Two of our committee Nia and Barry regularly attend and support the Stockport Group. I have attended the other Greater Manchester wide group. Speak to us for more information about our experiences if you are not sure whether or not the group is for you and do not fancy just coming along. The Stockport group has been also meeting once a month in Woodbank park but I am not 100% sure whether or not this is continuing
Greater Manchester wide Group Peer Support Group please Email Val at val.bayliss-brideaux@nhs.net or text 07702 66 81 69. 6pm start on Wednesdays backed up by a Whatsap group to continue the conversations and support. Val seems to know her way around what support is available and how to access it and does a great job of both supporting people with this and following up within the relevant parts of the NHS if things do not quite come together as they should.
Stockport Wednesdays 11.30am to 12.30pm marie.omalley@stockport.gov.uk or call 07800618570 for more details
As well as these two NHS run local groups there are some national and international Long Covid Groups you might want to consider. I am a member of https://www.longcovid.org/ Facebook group and they co-ordinate multiple Zoom meetings in a week you can join in. So far this includes some Chair activities, Operatic Breathing and 2 Peer Support Sessions on Sundays
Here are some other ones you might wish to consider:-
https://www.facebook.com/groups/fightingcovid/
https://www.facebook.com/groups/599976600919364/
https://www.facebook.com/groups/1190419557970588/
https://www.facebook.com/groups/177295420205691/
https://www.facebook.com/groups/626685911215985/
https://www.facebook.com/groups/539211516795453/
https://www.facebook.com/groups/1171854969879964/
https://www.facebook.com/groups/covid.uk.irl.survivors/
None of these I have any real knowledge or experience of. If you try any and have any relevant experience of then I can update the description.
Specific Programmes
https://www.eno.org/eno-breathe/who-is-the-programme-for/ You need to be referred by a specialist long covid clinic. You also need to be available for the 6 sessions. It is free. There is a similar looking set of weekly sessions you can attend through the Long Covid Support Facebook group that you can just attend if you think it would be helpful for you.
https://www.nuffieldhealth.com/rfsr#:~:text=Apply%20for%20the%20programme
This is a free 12 week program that involves 6 weeks of online sessions then 6 weeks of face to face sessions. Might need to travel to Bolton or Sheffield for the face to face sessions. There are limited spaces and I do not yet know enough about the programme to recommend. It is billed as in between the specialist covid clinics and the self directed support options available. Feedback would be appreciated and if not suitable then I can remove this. It does seem to involve excersise and for people with post exertional symptom exacerbation there is a danger that this could make them worse.
https://www.stasis.life/ This is a breath work programme and set of resources. It is recommended and used by the Mount Sinai New York Long Covid service and I use it myself. Within one week or so of doing the program it had a near magical impact on my health. Would recommend for anyone who has dysfunctional breathing/ breathing pattern disorder and maybe suggest people with dysautonomia/orthostatic intolerance consider it. There are other breathing programmes out there but this is the one I use and I highly recommend. It does cost about $5 a month but you dont need to join for more than a month to get access to most of the resources. I also use an app from the app store called “Breathe” which I have programmed the different breath work sessions from Stasis into and it tracks how often I do them which is good for keeping me “honest”.
Breathworks Manchester Free Mindfulness for Long Covid self paced course. I am not a particular fan of mindfulness but if you are then this is a very well put together course of sessions.
Miscellaneous
https://world.physio/sites/default/files/2021-07/Briefing-Paper-9-Long-Covid-FINAL-English-202107.pdf This is created in part to encourage medical professionals wanting to refer people or recommend physical rehabilitation For people considering physical activities this is well worth reading and considering discussing with your trusted medical professional if you are lucky enough to have found one.
https://longcovid.physio/ Primarily this is an organisation of Physios with Covid but they have some excellent resources for patients on pacing and other things. The podcast is also well worth checking out.
https://www.longcovid.org/ they have a good amount of interesting and useful information and the Facebook group I mentioned is part of this.
Ben
