Website survey

Website Survey: How accessible and effective has the NHS been since the start of the pandemic?

NHS services have clearly been affected by the Covid pandemic and we can appreciate the immense strain it has placed on NHS resources. However, since March 2020 there has been a notable effect on people with ME/CFS (and on others with long-term chronic conditions) who have needed to see a GP or specialist.

Many people with ME/CFS are still waiting for GPs to provide accessible appointments and for specialist services to reduce waiting times or to reopen. People who need an early and accurate diagnosis have been waiting for much longer than the recommended 3 months and haven't been referred to secondary care which has meant that some will have had treatment delayed if they have a diagnosis other than ME/CFS. Those with the condition will not have received help with management or have care and support plans established that can help with ongoing care, or been offered help with benefits, or care needs assessments.

But there have also been some really encouraging reports of GPs and specialists that have been providing really good levels of care despite the pandemic. We wanted to ask the community how their healthcare has been affected since the pandemic, and try to gauge how effective the NHS has been at serving their needs during this time.

Survey Results

How easy was it –

to receive an early and accurate diagnosis
  • Yes3.65%
  • No20.60%
  • Still waiting9.87%
  • I already have a diagnosis65.88%
to see a GP in person as often as you needed to
  • Yes9.66%
  • No65.88%
  • Still waiting1.50%
  • I couldn’t get to the surgery because my symptoms were so bad5.15%
  • I was worried about the risk of infection, so I didn’t try3.86%
  • I haven’t needed to see my GP3.00%
  • I don’t believe my GP can help, so I didn’t bother trying10.94%
to see a GP remotely e.g., by video/phone, as often as you needed to
  • Yes23.82%
  • No50.43%
  • Still waiting1.07%
  • Not a service my GP surgery provides20.39%
  • I haven’t needed to see my GP4.29%
to obtain a home visit as often as you needed to
  • Yes1.07%
  • No33.05%
  • Still waiting0.64%
  • GP refuses home visits for ME/CFS34.33%
  • I haven’t needed a home visit30.90%
to get a referral to an ME/CFS specialist service?
  • Yes7.73%
  • No11.37%
  • Still waiting4.08%
  • The local service closed during the pandemic0.64%
  • No services available in my area52.79%
  • I haven’t needed a referral14.38%
  • I don’t believe ME/CFS specialists can help, so I didn’t ask for a referral9.01%
to see ME/CFS specialists in person
  • Yes1.29%
  • No18.88%
  • Still waiting2.79%
  • The local service closed during the pandemic1.07%
  • I couldn’t attend the service because my symptoms are so bad.3.00%
  • I was worried about the risk of infection, so I didn’t try1.72%
  • No specialists in my area.56.65%
  • I haven’t needed this support14.59%
to see ME/CFS specialists remotely e.g., by video/phone.
  • Yes8.80%
  • No14.81%
  • Still waiting3.00%
  • The local service closed during the pandemic0.43%
  • The local service did not offer remote support2.36%
  • No specialists in my area56.22%
  • I haven’t needed this support14.38%
to obtain a home visit from ME/CFS specialists
  • Yes0.22%
  • No15.70%
  • Still waiting1.08%
  • The local service closed during the pandemic0.86%
  • The local service doesn’t offer home visits4.73%
  • No specialists in my area55.91%
  • I haven’t needed this support21.51%
Based on your own experience since March 2020, how do you rate the NHS and its ability to provide adequate accessible support for your needs?
  • Very poor60.09%
  • Poor19.10%
  • Average13.95%
  • Good4.29%
  • Very good2.58%
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