Confused patients – in need of “.com”?

by Bruce Elliott

Confused patients – in need of ‘.com’?

We have one of the best and most efficient health systems in the world. Having had Type 1 Diabetes since 1970, and a life full of football and fell walking related bumps, strains and breaks I’m so grateful for the NHS. It’s special.

And yet despite this great track record I have to confess that most of my friends and family talk just as much about waits, uncertainty and feeling a bit lost in the health and care system as they do about the wonders of the care that they’re receiving.

When it comes to providing personalised healthcare advice and support I think that ‘Confused’ is one of the most prevalent terms used and ‘.com’ is very rarely seen or offered to my friends or relatives. So I wondered if ‘.com’ can ever help them or provide a solution to the huge demand pressures facing health and care services?  

Nearly all my friends have parents in their late 70s, 80s and even a couple in their 90s. In most cases their parents live quite a distance away and few are digitally or ‘.com’ savvy. In the past 6 months alone rather than just sharing the joys of being in our 50s when we meet together, many have been worrying about their parents coping with:

  • Not fully understanding what’s been said or diagnosed in GP or Consultant consultations,
  • Dementia and the resultant confusion,
  • Dates and transport issues for hospital appointments,
  • Wondering if District Nurses, Specialist Nurses or Care Assistants really have been notified by their GP or Consultant and if and when they’ll be visiting,
  • Understanding, or knowing if plans are in place for hospital discharge,
  • Being able to get home assessments undertaken and care plans and packages in place for family members after debilitating strokes, or falls.

Some of the evidence indicates that my friends and relatives, although special, are very much the norm when it comes to understanding and retaining health information.

Studies have indicated that about 50% of information provided by healthcare providers is retained. Another study has painted an even less optimistic picture stating that less than 10% of information is retained. However, evidence seems to show that for most of us between 40 to 80% of what we’re told in a consultation is forgotten immediately.

And it gets worse as the study goes on to show that about half of the information we do think we remember is recalled incorrectly.

Can ‘.com’ provide a solution to improve patient safety, clinical efficiency and reduce confusion? I’m certain that it can at least help, and it has already for me. However, to do this I think that we all need to:

  1. View it from our own perspective as patients or carers, and then
  2. Be ACE:

Ask for and Access your medical records online:

As part of my work in the NHS I was lucky enough to meet the members of the Patient Participation Group at Haughton-Thornley Medical Practice in Hyde. Many of the people that I met had been former patients of the infamous Harold Shipman. One of the GPs who came to Hyde after the terrible crimes of Harold Shipman were uncovered was Dr Amir Hannan. Amir believes in the importance of building a ‘Partnership of Trust’ with patients and actively encourages them to build up a better understanding of their condition and how best to manage it. Accessing their GP medical record is an essential part of this and over 59% of the patients at Haughton-Thornley now do so, including 82% of my fellow Type 1 Diabetics.  

Nationally though still only 5.2 per cent of GP patients report that they are aware that their practice offers them the ability to access their records online and only 0.9 per cent of them have used this feature (NHS England and Ipsos MORI 2016).

Having access to my medical records has been of enormous benefit to me from understanding diagnoses, seeing that referral letters have been sent, viewing test results to check how good my control has been, and in ensuring that  prescriptions which I’ve ordered online are ready for me to pick up at my chosen Pharmacy.

Ideally your GP should recommend access to you, particularly if you have a Long Term Condition. However, in practice you’re more likely to have to ask for access yourself.

Contribute your own health information and knowledge to your Care Team:

I test my blood glucose levels 7 or 8 times a day. I can add them directly to apps which then show clear trends. I can upload and input details of my activity levels, the food that I eat, my sleep patterns and even track how my stress levels caused by my love of Sunderland Football Club impact on my control.

I have to manage and understand my condition 365 days a year. I’d be very happy to share my results with my Diabetologist, Diabetes Specialist Nurse and GP. I’d be over the moon if I could share it with researchers too to help find potential triggers and cures. I’d be ecstatic if I could share it with Medical and Nursing students to help build their understanding of Type 1 Diabetes in their training. However, few ever ask for it and only one has ever suggested how I could best share it with them.

Now I could do this via my own Personal Health Record (PHR), such as Patients Know Best which would also link to all my other Health Records too from my hospital care as well as my GP. I could send it to my Care Team once a year and flag any concerns I have. You never know it could save me having to take time off work and let another patient who really wants help and advice take my place.      

There are national commitments in place within existing Health and Care policies and plans in England to try and encourage us all to collect and contribute this sort of information. These include the ‘Five Year Forward View’ and ‘Personalised Health and Care 2020’ where commitments are given, for example to:  

  • having an accredited Health Apps Library in place by 2017,  
  • being able to view information from all health and social care interactions by April 2018
  • being able to add comments and preferences to records by April 2018

Ideally members of your Care Team should recommend suitable PHRs to you. But at the moment there’s little knowledge of their use, even in good practices like my own,  and so why not use one of the many PHRs yourself and help to contribute to their learning and education as well as to your Health and Care record.  

Educate and Enthuse others:

If you’re a ‘Confused’ patient and feel that after reading this that ‘.com’ may help you then help is at hand. The Patient Information Forum has just released a new Education Guide to PHRs, which will link you to a whole series of links, case studies and other practical resources.

The new guide aims to assist, educate and enthuse Patients, Clinicians and, in fact, all Health and Care staff and remove the confusion.

Going back to my own friends many of them also represent one of the most important groups of people that we need to enthuse, Carers. If you’re a ‘Confused’ Carer and your parent, partner or loved one is losing the ability to care for themselves you can help them, if they wish, to apply to give you consent to access their records, order repeat prescriptions and book appointments by proxy . Or if you have lasting power of attorney you can request access yourself on their behalf.

And so I believe that there is a way for all of us to reduce the time, worry and confusion you might have caring for you and your family by:

  • booking your appointments and prescriptions online
  • reading about your diagnoses, referrals, appointments and care plans online 
  • sharing your own test results and fitness levels with the people who care for you

As a Type 1 Diabetic, Husband, Dad, Son, Son-in-law, Brother, Uncle and NHS Manager I would love that to be the norm. In fact if we use ‘.com’ more it would be ‘ACE’.

The views expressed in this article are personal. If the ideas have enthused you and you’d like further guidance please let me know and I’ll try and help or provide introductions to many of the wonderful people who sparked my interest in Patient Online Access back in 2007 and have kept it burning ever since.  Bruce Elliott 14/10/16    Contact: [email protected] or Tweet @bruceelliottuk


After sharing this blog one of my friends, whose wonderful Mam had a severe stroke earlier this year and is now in a Nursing Home, shared some sad reflections on his experiences. As well as trying to arrange the care that his Mam needed he also had to ensure that support for his 90 year old Dad was in place to help him to continue to live at home independently.

‘I definitely endorse what you are saying. The lack of communication between NHS, local authorities, Social Services and other agencies causes problems throughout the system. It can take weeks and months to get relevant information by which time a situation may be beyond rectification. Much of the communication is by telephone, often there is no email or messaging option. So you may have a series of missed calls, then speak with someone who has no access to the relevant records.

In many businesses we see the successful use of email, messaging and electronic audit trail systems so that all concerned can view the status of a process and a full record of what has been said and done. A similar system for healthcare would make a massive difference. All concerned would be informed on arrangements required, for example follow-up treatment being booked.’

So many of these challenges could be overcome by the ways that I have outlined in my blog.