Many thanks to everyone who responded to our request for tips and experiences in the article asking ‘How hard is it to get medical evidence for your benefits claim?

There are some very valuable suggestions and cautionary tales which we will be following up on in the next newsletter.

Meanwhile, however, a number of readers have written about apps and websites, both NHS and other, which can be used to get evidence and  we’d like to hear about your experience of using them

Or your reasons for not doing so.

Below are some of the options people told us about.

NHS App

www.nhs.uk/nhs-app/about-the-nhs-app/

According to the NHS website the NHS app allows you to ‘securely access your GP health record, to see information like your allergies and your current and past medicines. If your GP has given you access to your detailed medical record, you can also see information like test results and details of your consultations’.

Some people felt, not unreasonably, that they had no hope of a detailed letter from their GP, but that a list of diagnoses, test results, medication and appointments was a valuable collection of evidence to support their claim.

Patient knows best

patientsknowbest.com/

This app says that it includes all your appointments, medical correspondence, test results, medication lists and care plans.

Again, this may be a source of useable medical  information to support your claim.

My Long Covid

mylongcovid.org.uk/

The ‘My Long COVID Needs assessment tool’ says that it helps you to understand your current Long COVID symptoms, your needs, what to do next and what help you can get.  It’s anonymous and takes 5-10 minutes to complete.

Given the wide range and variability of Long Covid symptoms, something which helps you record and organise them might be very useful.

Clearly this is a self-assessment tool, rather than medical evidence from a health agency.  But if it provides evidence in an organized and well presented fashion, it might be very helpful.

Pain tracker apps

There seem to be a lot of pain tracker apps, including free ones that can be downloaded.  They offer the possibility of keeping a detailed log of where you experience pain, how severe it is and how long it lasts.

My Pain Diary says it allows you to track your pain and symptoms and create a downloadable .pdf report to share with health professionals.

mypaindiary.com/

There’s also a list of arthritis apps compiled by AbilityNet

abilitynet.org.uk/news-blogs/what-are-best-apps-if-you-have-arthritis

The value of a pain tracker app would be to allow you to record details of the pain you experience over a period of perhaps several weeks and present this as evidence of the ways in which your condition affects your everyday activities.

Once more, it’s self-assessment, but that doesn’t make it any less valuable. 

In particular, apps like these may be really helpful in helping you to show how your condition varies and for how much of the time you are likely to meet the criteria for any given benefit.  They may take away some of the guesswork and show that your self-assessment is based on careful observations.

Mental health apps

Some mental health apps include mood and thought diaries and habit trackers.  Mind in Brighton and Hove have compiled a list of some of those they consider most useful.

www.mindcharity.co.uk/advice-information/how-to-look-after-your-mental-health/apps-for-wellbeing-and-mental-health/

As with pain tracker apps, these may prove to be helpful in compiling and organizing evidence about the way your condition affects your everyday activities.

Are apps useful?

Have you used any of these apps?

Would you avoid using them because of privacy or other concerns?

Let us know what you think by leaving a comment below or by sending us feedback.

Comments

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  • Thank you for your comment. Comments are moderated before being published.
    Wendy jane · 1 months ago
    I personally won't use apps , especially NHS .If the Government have they way everyone will be trapped in to a  digital system. Not for me thank you ,I personally will print off a summary care record from GP surgery .
  • Thank you for your comment. Comments are moderated before being published.
    Seels · 1 months ago
    I used printed off screenshots from the NHS app. 
    I sent it all care plans and screen shots of all test results and medications on repeat. 
    I sent letters from all professionals involved in my care. 
    I also sent screenshots of my online mood app ,emood, which shows graphs of my bipolar mood and sleep etc. 
    I think any evidence that can be given is going to be helpful to your case unless obviously you have claimed you cannot use phones or computers at all! 


  • Thank you for your comment. Comments are moderated before being published.
    DianaW · 1 months ago
    MyLongCovid.org.uk is considerably better than your comments suggest. It's not a personal monitoring tool at all.
    It prompts the patient to remember and take into account a long list of long Covid symptoms - and, since concentration and memory are often badly affected, ensures that one doesn't forget any of these.
    Then, it automatically collates all the information that the patient has provided into a formal report which can be downloaded and/or have e-mailed to one's personal e-mail account. This report is invaluable to any doctor whom one consults, saving both patient and doctor the time usually spent asking about and detailing symptoms, but it also effectively shows the current state of the patient's long Covid issues. (It can be used repeatedly but not at short intervals.)
    This report can be sent to anyone the user likes, including the DWP.
  • Thank you for your comment. Comments are moderated before being published.
    rusty · 1 months ago
    Not an app but I relied heavily on websites to back up my arguments at MR and appeal (although the DWP changed their decision well ahead of the hearing having reviewed the information I'd put in at MR - I'd added nothing substantial in my appeal application, just a distillation of the main points in my MR submission).  I have impairment in some cognitive domains although score between well in other domains and it was, I believe, the latter that meant I scored no points for the difficulties arising from my cognitive impairment.  One of the assessor's arguments was that I take no anxiolytic medication, I used the British National Formulary website (provides key information on the selection, prescribing, dispensing and administration of medicines) to show that anxiolytic medication would not be recommended for my condition.  Used lots of other websites too - mostly US based ones - to show research findings on how my condition typically manifests in day-to-day life.  As well as being useful for PIP purposes these websites, I believe, saved my sanity as there is very sparse or no information let alone services to help with what I'd been experiencing as a result of my condition (long term and delayed onset effects of cancer and cancer treatment), meaning that for a long while I'd thought I was losing the plot. 
  • Thank you for your comment. Comments are moderated before being published.
    Zenobia · 1 months ago
    I was suddenly getting emails from Patient Knows best. I didn't agree to it and don't know why I was getting this. Also it only covered some of my appointments etc so I didn't see the point. It was very difficult to sign out of it which made me angry as I never asked for this app. I know I never asked for it as I do not use a smart phone. I am angry that everyone expects me to have /use a smart phone. Until it is illegal to do so, I will not use a smartphone. I have retired and have been forced in my previous employment to use modern technology including iPhone etc.  Now I am free but still needing to fend off demands. Seriously, not everyone has or wants a smartphone and people on benefits long term are getting excluded  from the world. This seems undemocratic to me.
  • Thank you for your comment. Comments are moderated before being published.
    Elaine · 1 months ago
    I suffer with seizures but no app to keep records 
  • Thank you for your comment. Comments are moderated before being published.
    C · 1 months ago
    I use MindDoc to keep track of my mental health symptoms and have done for several years. They provide reports every 2 weeks on your mental wellbeing and how well you fit medical criteria for depression. I provided about 20 of these reports when I first applied for PIP and my full report noted "...extensive evidence of severe mental health issues has been provided." - the only evidence I provided was those reports. Definitely worthwile IMO.
  • Thank you for your comment. Comments are moderated before being published.
    angela · 1 months ago
    Who owns the data? That is always my first question. Not safe in my opinion. 

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