In New York

In New York

Friday, 6 September 2013

Do's and Don'ts for Neurologists

We recently attended a neurology appointment at the West Middlesex Hospital. Jenny came with us. The ‘West Mid’, as most people call it, still has the power to inspire fear in Roch and in me, on his behalf. Almost three years on from the death there of our friend, Gerry McDonagh (see blog post passim 03/11/10), Roch’s anxiety about being admitted to the West Mid persists. With each visit, we seek reassurance. Has the standard of nursing care for MND patients improved? Following Gerry's death, we had been told that an information leaflet about MND and the needs of MND patients was being prepared for nursing staff and at each of our visits we have enquired about this. The doctor we see there never has any answers.

Predictably, after our appointment we were no wiser and no less anxious about possible admission. Let me be clear - we are not talking about palliative care, as such. We are talking about basic nursing care. Gerry did not need palliative care on admission on a Friday, but he needed it by the end of the weekend because he did not receive the proper nursing care when he was admitted.

Roch calls it ‘Death by Hospital’.

As a result of our visit, I have prepared a list of ‘Do’s’ and ‘Don’ts’ for neurologists.
From this, you will gain a pretty accurate picture of how our consultation went.

Basic Do’s and Don’ts for Neurologists:


Interrupt your patient
Tell your MND patient that there are worse diseases to have.
Tell your MND patient that it would be worse to have bulbar symptoms first.
Tell your MND patient to ‘stay positive’.
Tell your MND patient that you might die before them.
Tell your MND patient that you have anxieties too.
Diminish your patient’s experience of their illness.
Tell your patient you have no power to change things.


Acknowledge their fears.
Tell them you will do what you can to change things.
Do what you can to change things. For instance:
  • Find out how you can ensure your MND patient will not die needlessly, due to inadequate nursing care at your hospital.
  • Take action to start to change things.
  • Get back to your patient to let him know what you have done.  
It’s not rocket science.


Following the appointment Roch entered into email correspondence with Dr. Pearce, Consultant Neurologist at the West Mid, who has now sent us a copy of the information leaflet around the care of MND patients, prepared for nursing staff. Apparently this leaflet has been in existence for the last two years. As the doctor we spoke to was unaware of its existence, I suggest that Dr. Pearce lose no time in sharing it with the rest of his team.

We are, on the whole, pleased with Dr. Pearce's speedy response and it has gone some way towards alleviating our fears although we remain anxious.

He also drew Roch's attention to the CMC database:

"There is now a national data base for patients with life-limiting conditions known as Coordinate My Care (CMC).  You are eligible to join the registry (and I would urge you to do so) and this will alert care givers down to an ambulance level, so that all parties are informed, as much as possible, of your individual circumstances and preferences."

So we need to make sure Roch is registered on this database (and hope it functions as it is designed to do), that he is happy with his End of Life Directive and that the hospital and GP have copies of this on file. I can't say I'm filled with confidence.
I do know I have strong, supportive professionals on side, like Donna, our Hospice Nurse and Jenny, Roch's new PA but as his wife and main Carer I anticipate that it will be me in an emergency situation standing between the nursing and medical staff and my husband. Funny to put it like that, but that's how I see it at the moment - a 'them' and 'us' situation. That's not good. I clearly need more reassurance.

I do not want to be in a situation where a remark like "Wife claims husband has MND" appears on Roch's admission notes. True story.





1 comment:

  1. Hi Deirdre

    I feel your and Roch's frustrations and fears about hospital. Colin and I have spoken about it lots and it's his wish that, if he cannot die at home, that he dies in the hospice. We have an Advanced Care Directive and all our Healthcare professionals know that is his wish. If he is admitted to hospital, he is to be transferred to the hospice as soon as practically possible. We also have set up Lasting Power of Attorneys covering health and finances, so I legally have to be listened to if he is unable to express his wishes.

    Hospitals are fine for less complex conditions, but nurses don't have the time or understanding of MND to be able to care for patients properly.

    I feel happier knowing we have a brilliant MND Co-ordinator through the hospice, who is a rotweiller when it comes to the care of her patients.

    H xx