View Full Version : Can You Help Produce Some Guidance?

Robyn Copley-Hirst
24th November 2011, 14:34
Hi Everyone,

Below is information about a study being done by the National Council for Palliative Care. It would be really useful to have the voices of those living with MND reflected in this guidance. We hope that some of you find this interesting and feel willing to consider taking part.

It will help them produce a guidance publication. We are helping fund this publication, and along with this have agreed that we will help the NCPC identify people to interview. The NCPC leads the Dying Matters coalition which aims to change public attitudes and behaviours around dying, death and bereavement.

Best Wishes,

__________________________________________________ _____________________________

Difficult Conversations: We would like your help.

We believe that everyone deserves to live and die well.

Thinking ahead and talking openly about the future and people’s wishes for the end of life can help improve quality of life. For example, ensuring that people are cared for in the place of their choice, receive the kind of care they would like, with practical and financial matters attended to and wishes for what happens before and after they die fulfilled. It can also make things easier for those left behind.

Having this kind of conversation can be difficult and some people may prefer not to discuss such things.

However, others may wish to be clear about what will happen and be prepared, practically, emotionally and in some cases, spiritually.

The National Council for Palliative Care is producing guidance to support professionals in how to broach these difficult subjects with people affected by Motor Neurone Disease (MND). This will be based entirely on the thoughts and experiences of people affected by MND.

If you have experiences or views and would like to share them, we would be delighted to hear from you.

How you can help

We’d like to hear how, when and with whom you’d like to have these conversations, and about any experiences you’ve already had (good or bad).

Everyone is different and there is no one, right answer but knowing what you think may help us to see if there are some definite no-nos or things that, in general, would make it easier.

The kinds of things we’d like to ask you

1. When would you want to have these conversations?

2. Would you like to raise the subject yourself or would you like someone else to?

3. If you would prefer someone else to bring it up – who would that be?

4. What would you want to talk about and are there some things that you’d find it especially hard to talk about?

5. What would make it easier for you to have this conversation?

Why we’re asking:
We would like professionals to feel confident, supported and equipped to have conversations with families at an early enough stage, to provide opportunities for people affected by MND to think ahead, should they wish to.

What it would involve:
An informal conversation, which could take place by email, telephone, face to face, by post – however people are most comfortable.

Ideally in November, December (2011) and January (2012)

Next step
Please contact me, Jo Black, Involvement Manager at NCPC on 020 7697 1520 or J.Black@ncpc.org.uk

About the National Council for Palliative Care (NCPC)
The National Council for Palliative Care (NCPC) is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland. We believe that everyone approaching the end of life has the right to the highest quality care and support, wherever they live, and whatever their condition. We work with government, health and social care staff and people with personal experience to improve end of life care for all.

NCPC leads the Dying Matters coalition which aims to change public attitudes and behaviours around dying, death and bereavement.

19th December 2011, 12:26
Hi Robyn,

Only just come across this thread ,and for me after reading the contents ,the sooner the better , I can only relate to my first contact with MND , I had been fit and well until 2009, when i was feeling a bit unwell nothing specific ,but not right ,after seeing gp ,and then referred to a neurologist and having MRIs and Scans and EMG tests ,surgery for a blocked artery in my neck, which failed by the way ,it was suggested i may have myastenia gravis , another one i had never heard of ,being treated for that for nearly a year then told maybe it wasnt myasthenia after all ,yet more tests and scans ,we had the news that it may be MND Bulbar , still didnt ring any bells , only the faint memories of the man i could listen to for ever Steven Hawking ,The first thing you do is well denial ,i feel ok ,nothing wrong in that way ,but then to have it explained to you by a very keen speech therapist ,going into great detail of how i was going to die , sooner rather than later , To be told in such a cruel manner with you wife sitting there , both of us expecting advice that would help my speech ,and to be hearing such graphic details so soon ,and the most remarkable thing was ,the specialist ,hadnt even confirmed my diagnosis. So for me There really does have to be a better way ,intial meetings with MND , confirmed my feelings ,i think only the present condition details should be given and after a time allowed for this to sink in ,only when the patient needs more advice should it be given ,rather than being told it all in one go ,There will never be a right time to tell someone they are not going to live as they thought , but to have some hope while they live with this condition, surely helps , as for patients the need for a change in how we see there needs ,rather than the archaic views of do gooders need to be changed .

19th December 2011, 13:44
This is an awkward one. There is an old saying: 'what you conceive and believe, you will achieve'.
When I was first diagnosed with Bulbar MND I was only having speech problems, but the more research I did into what symptoms I would have to face, the more problems I seemed to get. I am convinced the mind creates many of the problems.
I agree with Pete; to hear too much from day one is not a good thing. The less you know and the longer you are in denial, the slower the progress. This is just my opinion.
I have no fear of death as I believe it is not the end, but I do find talking about it very difficult. But it does need to be discussed. We all know what's coming eventually, but we just don't talk about it.
I also agree we should be allowed to die with dignity and not told we cannot end our own lives. I don't want to be revived upon death, I've no intention of dying twice.

19th December 2011, 13:54
When first diagnosed with MND I was asked by a specialist nurse if I wanted to hear what was going to happen too me, my reply was no as I had just watched a friend die of MND and he fell to the power of suggestion, each time something was mentioned to him it happened the next day.
My answer "no" was seen as being in denial, the bottom line is MND is different in each person so we need to be treated individually-tough and expensive.
Regards Mark

Robyn Copley-Hirst
30th April 2012, 12:22
Hi Everyone,

Just a quick mention to say that this is still open to people who wish to contribute. All of the contact details and background information is in my original post for anyone who wishes to take part.

Best Regards,


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