Changing conditions

So, I’m now at the point where my palliative care nurse thinks I qualify for NHS Continuing Healthcare – fully funded care for people who meet certain assessed criteria:

  • the help needed
  • the complexity of needs
  • the intensity of needs
  • how unpredictable the needs are, including any risks to health if the right care is not provided at the right time

NHS Continuing Healthcare isn’t provided to many people and, as we know from recent national debate, most people will have to pay for their own personal care up to £86,000 under the incoming social care arrangements.

There are two ways in which a qualified health professional can apply for continuing care.  The first route is based on the completion of a checklist, and the number of points scored is added up.  The result is then assessed by the local clinical commissioning group who make the final decision about eligibility.  The second route is a ‘fast track’ available for people who have a terminal condition which is progressing rapidly.  Sadly, I qualify for the fast track.

I’ll be entitled to up to four carer visits a day.  I can also have overnight care on up to three nights per week provided by the Marie Curie organisation.  Sometimes I do wake up and need Sue’s help four or five times per night (to change position, adjust the ventilator face mask, or deal with my dry mouth etc). Overnight care will allow Sue to have some unbroken nights, however it will require a change in sleeping arrangements.  More than that, it will need us both to accept help from other people – something I think Sue will have more difficulty accepting than me.

On 7th March I was provided (at long last) with a TD Pilot iPad Pro based eye gaze system on a trial basis by the NHS Environmental Control team.  I’ve been providing regular feedback, and on 28th March it was confirmed that I will be issued with a new device on a permanent basis.  For an iPad user like me, with files, photos etc on Apple iCloud, this is a perfect solution and I am one of the first people in the country to receive a TD Pilot via the NHS. A great outcome (that demanded a lot of patience!)

Hanbury Manor

We had a lovely family weekend away in March staying at Hanbury Manor hotel near Ware for two nights. It was sunny and dry; the hotel has a fabulous golf course (that none of us used!). Sue and I had to take a huge collection of MND related equipment with us and it’s likely that this will be last such stay away for me.  Instead, we’ll focus on having time away at our static caravan where we will be able to leave some duplicate pieces of MND kit in place and we won’t have to hurry to get into breakfast. It’s 31st March today and as I write it’s snowing outside.  Last week we enjoyed summer-like temperatures and beautiful blue skies.

Grandpa and the boys