Just realised you’re a carer? Three things it’s good to know now.

Lesson 1  – Don’t be passive in any situation, I don’t care how senior they are or what specialist knowledge they have.

Right off the bat I realised I needed to be the decision maker; I felt that there were some occasions when I thought someone else was the decision maker?  This was never the case, at the bedside in a hospital ward, during some social care meeting or just choosing a hairdresser to come to the house; I realised I had to make all of the decisions. That does not mean I did not include my Mother in these decisions, but it became pretty clear all decisions would have to be made by me.

This is particularly the case in healthcare situations. During my Mother’s last stay in Hospital, which should have been a short one, I quickly realised that the ward staff were unable to make any decisions about my Mother. She was not well enough to go home without a care package and no one could decide how big that would be or who should provide it.  So we kept going round and round in circles with me asking their advice.  I found I had to guard against being passive and learnt how to challenge decisions that were or were not being taken.

Lesson 2-  When someone tells you something check both you and they understand what they are saying.

People called me out to the blue and started chatting about my Mother and her needs. This initially seemed like good news.  On at least two occasions I realised that they were not talking about my Mother, some transposition of phone numbers on a list perhaps.  So when I  got one of these calls I did the following:

  • Asked them to identify themselves
  • Got their contact details –  I always did this first. Get their general contact details to and their specific job title.
  • I recorded all of these interactions into an Evernote Notebook; you can, of course, use a paper notebook
  • I confirmed who they thought they were talking about –  I did this through active questions like; “ You wish to discuss Mavis Coulthard with me who’s on Ward XX at the Royal Surrey Hospital?  Is that correct?
  • I would then confirm who they thought they are talking to.
  • Then and only then would I have the conversation
  • Finally, I would confirm the agreed actions back to the caller.

Lesson 3 – Write it all down and keep your eyes and ears open

Don’t rely on your memory, write everything down how ever trivial it might be.  A mobile phone camera is really good at capturing complex meds and forms.   I found that I was often the only person that had all of the information.  The last hospital discharge letter, a list of the latest meds, the name of the intravenous antibiotic Mum was on.  I found that no one seemed to have the right information at the right time.  More of this in another Post.

Once my Mother was discharged from the Royal Surrey Hospital without any medication.  At the time, she was on about 13 different pills.  Fortunately, I had a photo of her medications and the schedule associated with them.  I was able to send this to a local pharmacy and they were able to sort out the mess with some help from my Mother’s GP. Without that intervention, I guess Mum would have been back in Hospital that night.  The healthcare ombudsman has recently published a report into the discharge of older people from hospital.  It does not make good reading.

I found I needed to be aware of the conversations around me and my Mother, I read all of her medical notes, I asked open-ended questions and listened hard to the answers.  I found it easier and easier to challenge the jargon. The NHS loves jargon, three and four letter acronyms abound and I just asked what they meant.  Sometimes not even the user knew what they stood for.

 

Too many unchecked assumptions in NHS Information Technology.

How many assumptions do we make when setting out a plan to change or build something?  It’s OK to make assumptions but it not OK if we don’t check that they’re correct.   Looking back on my time in NHS England I can now see that very few of the assumptions made were ever checked.   Here are some questions you might think about asking before you set out to do anything.   This one checks some assumptions about searching for such services.

This set checks some assumptions we might make about people  searching for services.

Do you look for local services?

  • How often do you look for local services?
  • Where do you look?
  • Why do you bother?
  • When did you last look for a service?
  • What service did you find?
  • Where did you find that service?
  • When you found a relevant service did you book or use  it?
  • When did you last book a service?
  • What are the implications to you personally of not finding services?
  • When was the last time you failed or ran out of time to find a service
  • Where or what else have you used to find services?
  • Who else shall I talk to and is there anything else I should have asked?

What to avoid

  • Talking about your idea and getting compliments about it
  • Don’t get caught up in their ideas for your product/service or change idea
  • Generic Claims, “I always/never…
  • Future Claims – “I could/would…
  • Hypothetical feedback – “I might/could…

 

The bottom line of this one, if people aren’t looking for services don’t build a service that provides a look-up service.

So, three things for any Senior Responsible Officer (SRO) in the NHS  to do before a Project kicked off:

  1. Make sure the assumptions of the Project are identified.
  2. Test those assumptions with a number of audiences, users old and young,  organisations and specialists etc.
  3. Make sure you have validated any learning from tests you make.

If you can’t do these three things; then don’t start.

Quick thought:  Did anyone test the assumptions made before the Electronic Prescription Service was built?

BriteLives.com

Hello, we’ve had an idea that may change the way older people access local services. It stems from the challenges I faced caring for my Mother, but I guess you may have spotted that.   We  have been at it for eight weeks now and we have learnt a thing or two.

Lesson 1:   Read The Lean Startup and once you have done that, read it again.  It’s not about Startups it’s about constant innovation.  It will save you time and more importantly money.

Lesson 2: Work out, as concisely as possible, how to describe your idea.

We started with:

The leading marketplace to make the provision of personal, household and community services easier and more accessible, helping older people and their families live happier and more connected lives“.

We are now:

BriteLives.com is the place where you can find and review local and personal services for older people.

Cutting out those words was a great deal harder than writing them in the first place.

Pitch it to friends and to yourself.  Make sure you do it slowly, accent the name of the Business. Something like:

BriteLives.com  (pause) is the place where you can find  and review (pause) local and personal services (pause) for older people.

Lesson 3:  Join an innovation accelerator.  You may be sceptical about the value, don’t be. You can’t think of everything, so let someone else force you to think about the relevant things and set some deadlines for you. It will accelerate the development of the idea more than you could imagine.  We are part of BGV and wow what a difference they have made already.

Quick Test: Can you guess what BriteLives.com does?

 

 

 

Role of Friends and Family

This third blog highlights the things I learnt looking after my Mother during the last few years of her life.

Friends and Family

I thought I was alone in sorting out the increasing complexities of my Mother’s life. Focusing entirely on the needs of my Mother meant that I forgot that she had a loyal and capable group of friends. They had been helping her with all sorts of tasks and running errands for her for years, and I needed to include them in my plans and activities.

Neighbours and their role

Neighbours are as worried as you are. They can often see what you can’t see, the gentle deterioration of Mum’s general health, that fact that she was getting out less and less. I quickly found that neighbours were a great source of information, support and help, I always made sure I dropped in on at least one of them each time I visited Mum. If they had helped in some specific way that week, I might take flowers or a bottle of wine, to thank them for their help. I felt that the key was to reach out early and tell them what was going on.

Is there a Doctor in the Family?

If you’re very lucky, you may have a healthcare professional in your family. I have a relative that had been a GP; he understood ageing and the likely issues my Mother would face. I found that if I carefully noted my Mother’s symptoms and relayed them to him, I could get an understanding of what might be the issue. I cannot tell you why, but when Mum had a urinary tract infection, she would quickly become confused and paranoid. Now some reading this will know the reason, but at no time did any of the healthcare professionals working with us made such a connection. They all seemed too busy and too hurried to encourage our involvement in my Mother’s care. (see my earlier blog about decision making).

Access and Security

On a couple of occasions, someone wanted access to the house. If the key holding neighbour was away, then this could be an issue. I bought a LockMaster key safe and screwed it to the door frame and put my mobile number on it. Then should someone need access I could tell them the code and they could get the key? It meant that neighbours knew they would not have to force entry. Later I learnt that this was a very useful thing, and although no one said it at the time neighbours were worried what would happen if they had to get access quickly, the key safe removed their anxiety.

Top Tips

    • Tell friends and neighbours what is going on as early as possible.
    • Ask neighbours what has been happening, they will be happy to update you.
    • Find someone you can discuss medical issues.
    • Thank neighbours early and often.
    • Use a key safe for house keys.