Are you a patient with an issue not related to the coronavirus, and yet facing new challenges because of it?

Understandably the healthcare system is currently focusing its attention on the deadly effects of the coronavirus, so the need to pay attention to patient safety is now more important than ever. We’re asking for patients, carers, family members and friends to share their stories, highlight weaknesses or safety issues that need to be addressed and share solutions that are working. We’re looking for people to share with us:

• What have you noticed that has been different since the crisis started? (e.g., outpatient appointments, collection of medication, GP appointments, cancellation of operations).
• Whether you have had an elective intervention or appointment postponed? (Do you know the warning signs to call for help? Is there a hotline or urgent clinic for you to contact?).
• Has anything improved since the crisis? (e.g., has the use of digital/virtual interventions (accessing a GP) had a positive effect).

Read a summary of this initiative here.

If you are a member of the hub, just reply to this topic below. If you're not already a member of the hub, it's quick and free to join. Register here.

We will be identifying themes and reporting to healthcare leaders with your insights. We want to help close the gaps that might emerge as everyone focuses on the pandemic.

A member of the hub has just shared the nightmare she is currently living through with her 25-year-old son who has significant cerebral palsy due to kernicterus and is speech, hearing and motor impaired but is isolated with no help.

What more should be done? Do you have a similar story to share? How can we protect the most vulnerable during this pandemic? Add your comments below.

Adele Doherty, Head of Dementia Voice at Alzheimer's Society, has written a blog highlighting the difficulties and fears for dementia patients and their families and carers during the coronavirus pandemic.

 

I think this topic of how the measures taken for COVID are impacting on the safe treatment of other medical conditions is very important.

NHS England have published treatment guidance on how a wide range of medical conditions should be priortised and treated during the Covid pandemic - see link below

https://www.england.nhs.uk/coronavirus/secondary-care/other-resources/specialty-guides/

NICE has also issued guidance and more is on the way.

https://www.nice.org.uk/covid-19

Ths guidance may introduce new risks and increase other known risks.

Is this guidance being followed in practice or are patients treatment being impacted when local guidance and priorities are being introduced?

Thanks David. I’ve promoted on my FB and LinkedIn accounts too. Hope you’re well and safe. Helen 

My mum has been losing weight for almost six months (unexplained). She is undergoing tests to see if she has a rare adrenal tumour. Due partly to how long the analysis takes for these tests, they have taken a long time. Her consultant appointment is due end of April - now to be done over the telephone.

If they do discover it is the adrenal tumour, she would need further investigation to identify whether or not it is cancerous (usually not cancerous) and potentially an operation to remove it so she can recover (fairly good outcome stats). My concern is that if this appointment gets cancelled, she cannot afford to continue to lose more weight, she will literally waste away (she is only 7 stone something at the moment). Will she just be left to deteriorate? 

A Facebook follower, commented the following re emergency dental services and local responses...

Dr Anne Connolly, Chair of Primary Care Women's Health Forum (PCWHF), provided Patient Safety Learning with the following comment:

"There are concerns that women’s health will suffer - as usual women will tolerate their problems without seeking help or prioritising their needs.

One concern is the lack of access to contraception with Sexual health clinics becoming harder to access and not prioritising contraception and routine GP clinics/practice nurse clinics becoming hard to get appointments at - or being dealt with over the phone.

We have issued a guidance for our members on managing contraception remotely.  We are developing an HRT version too and will share other resources as we find them or feel that we can make a difference.  Rock my Menopause is a patient facing campaign and we have the support network through the Facebook page but also all the other resources for patients and clinicians to use."

PCWHF Resources 

How to manage contraceptive provision without face to face consultations

Sarah-Jane Marsh is the CEO for the Birmingham Women's and Children's NHS Foundation Trust.