PDA

View Full Version : What do you wish your health care professionals knew.



respphysio
7th December 2014, 15:25
Dear All

I am presenting at a meeting where there will be many commissioners and representatives of NHS England.

I would like to ask those of you living with MND - as a patient or carer -
What would you like to tell those overseeing your care?
What do you wish they knew from the outset?
Is there anything that always get overlooked?
What is the worst problem you have?
What would make your care/management better?
Anything and everything!!

There are many things that I hear my patients say to me, and would like to know from the wider community what would make a difference. Whether its possible or unlikely, please please let me know.

I can be contacted through my website, or on here.

Thank you so much for any information you feel able to give me.

Graham
7th December 2014, 18:41
Dear Respphysio,

You are a true pioneer. This is the first time any MND professional has engaged with our forum.

There are many ways our care can improve. Just read some of our posts.

My care has been particularly woeful. There are generic features of my poor care. My complaints are going before the Local Government Ombudsman and the Parliamentary Health Service Ombudsman, so it's best that I say no more about my issues

Regards

Graham

pete
7th December 2014, 19:16
Hi Respphysio,

I think Graham's correct in what he says ,I Also cannot remember anyone asking before you.

For me I think the most worrying issue was ,being told in the same breath the condition they thought I had, and advising not to purchase any long novels !!, because I had little time left, simply because it took nigh on two years the diagnose, and guessing that I had symptoms a good two years before that. So according to statistics ,not much time left, all this from people who know little about the disease ,and offering no treatment because they didn't have a treatment other than to treat symptoms as and when they arise,again using drugs that may help some but did nothing for others.

Having to fight for every mortal thing in one area and seeing other areas at least trying to help and some just unbelievable good. As for the so called care provided by social services,that don't exist in our region ,even if you do get a visit, the time scales for your claim and then the work even started ,offers no real help, only adds to the stress. Wheelchair services again have no clue about MND and your needs. Sorry if this isn't what you wanted to hear, but for some it's dire , mainly I guess because money is tight.
What I would like for Christmas is to wake up and not use two rolls of kitchen towel a day to soak up the saliva, ? Or is that asking to much.

Lycanthrope
7th December 2014, 19:41
Hi x It's really kind of you to give us a chance to voice our experiences. For me it would have helped if all the Health Professionals had taken the time to think how they might have felt if it had been their much loved family member diagnosed with MND and treated us all with a little compassion and understanding instead of looking at my dad as a write off and to get him out the door as quickly as possible. I agree with Pete - having to fight tooth and nail for every little thing does not help. I found the OT and Wheelchair Services particularly heartless and uncaring. I never did manage to get a wheelchair for my poor dad. All in all the only good thing was the visit from the MNDA, who were so helpful and caring and could certainly teach the health professionals a thing or two. It would have helped if I'd been made aware of some of the equipment that would have been useful for my dad at the time when he desperately needed it. Unfortunately, my dad's deterioration was so quick, that I just didn't know about it until it was too late. Becky x

Bilando
7th December 2014, 20:22
To give you a short answer to your many questions I would like to see more optimism at the time of diagnosis. I am very aware of how quickly the condition takes some of us but those fortunate enough to have the slower progressing forms of MND a little optimism from the professionals would be good. I now know plwMND who have survived 10 years or more living reasonably content lives. I accept that the professionals cannot predict how long we will survive so why only tell us about the negative aspects eg ADRT , Pegs etc. If they cannot predict longevity try the optimism that palliative community nurses introduce.

Rachel
7th December 2014, 23:39
Very much appreciated that you have approached this forum for input. My request is for UK research into the potential benefits of supplements. There is ongoing comment, support and questions into whether supplements could possibly help. The medics offer no hope at diagnosis just support of how to live with MND. There is a glimmer of hope with supplements but it is costly and complicated. It needs proper UK consideration and research please.

Candle
7th December 2014, 23:45
By the time of diagnosis in early 2014 speech had become virtually unintelligible. The neurologist rushed onto the ward at lunchtime with two medical students. He spoke over us pointing out fasiculations to the students. There wasn't enough time to communicate as an iPad provided by the speech therapist was necessary and it was slow. From this visual examination he confirmed the suspected diagnosis, advised it was terminal and, apart from Riluzole, there was nothing else to offer. He provided contact details for the MNDA and the hospice, leading us to believe death was imminent. When we started to cry he looked in discomfort, asked if there were any questions and all but ran out of the room with the sheepish students following him.

Some months later the respiratory team were marvellous although they advised a PEG and/or breathing mask was not appropriate. Apart from measurement of oxygen levels nothing was done or suggested.

The speech therapist had nothing else to offer after the iPad, which was used successfully for just a few months. We then paid for a laptop ourselves and MNDA funded the licence for Grid2 software, which was brilliant to be able to text and email.

The promised environmental controls that could have improved quality of life didn't arrive in time despite an assessment 3 months earlier.

Despite most of the literature saying MND is not usually painful, this was very much the case throughout in addition to everything else.

If there was anything that could have been better it would have been a specialist MND nurse to be with us at diagnosis and on the end of a telephone for advice. We never saw or spoke with one. The Nursing Home had never nursed anyone with MND before although they did their best.

ccinjersey
8th December 2014, 01:59
Hi Respphysio

Compassion, and empathy seems like it should be on the list of what every healthcare professionals should know. When my dear friend was given the diagnosis the neurologist said ‘we prepare for the worst, and hope for the best’ I’m not sure if that falls in either one. Sadly, I don’t think it’s something that can be taught in their residency programs or their text books.

It does sound like you have it Respphysio since your asking these questions. Good for you :)

CC

respphysio
8th December 2014, 11:43
Thank you all for being kind enough to share your comments.
Please keep them coming.....

As a physio, when I go in to treat those living with MND, I share their frustrations at lack of support, information, equipment, optimism, choice, research, understanding and time.

I have the opportunity to take these issues to a large group of people involved in organising home care, and I want to voice the real problems that people living with MND face.

It has been great that this year's Ice Bucket Challenge has raised the profile of MND and hope we can take advantage of that to make some meaningful differences.

I am downhearted to see that many of the issues raised on various threads are, as you say, not addressed by professionals.
For example, many threads about swallowing, choking, coughing should be thoroughly assessed and treated as a matter of urgency by professionals, but that is clearly lacking.
It is things like this that I hope to address, and bring to the commissioners.

Thank you all again for your time, I do share your frustrations and am working hard to address those that we can.
x

miranda
8th December 2014, 12:32
Good to know that you are prepared to put forward our various points. From the forum members and my own experience I suggest
1. Planning ahead for equipment.
2. There is no time to wait for equipment for some people.
3. Accepting that health care professionals can't be experts on everything, so check with those who have expertise, like the MND association.
4. Crying does mean depression - it might be emotional lability.
5. Signposting for benefits entitlement and Blue Badge scheme.

Thank you.

Graham
8th December 2014, 14:14
Dear Respphysio,

This is a huge opportunity for us as you say.

The power of social media has not been harnessed by the NHS at all. With MND it could play an important role. Already you have seen several cries for help. It is vital that your profession continues to engage with us on this forum. Your compassion is noted. Thank you.

Kind regards

Graham

respphysio
8th December 2014, 14:24
Thanks Miranda,
will do

Thank you Graham - am trying to get as much social media involvement as possible.
Ruth

Springtime
8th December 2014, 15:19
Hello Respphysio,
I have read the posts on here to you, and so thanks for as Graham says your compassion and interest.
I do not wish to contradict myself as I have commented many times on here most of the care my husband has received from diagnosis has been excellent. Our MND team is based in Liverpool, which is quite a journey for us so we are in the care of our local NHS for most of the time.However, things seem to fall apart when you are sent home, away from the care of MND team and left in the hands of local care NHS.
The recommendations given by MND team are not always followed up, and a lot of the advice you get from them is overlooked. We have found that when we get down to the basic problem, it is lack of understanding and communication within the local NHS teams. The idea of having an MND team will only work if the local NHS works with them and they clearly dont in all cases.

Springtime

miranda
8th December 2014, 18:06
Just another thought - the Form D1500 is like gold dust in some areas with variations in whether GPs etc will complete it.

Terry
10th December 2014, 12:08
By the time of diagnosis in early 2014 speech had become virtually unintelligible. The neurologist rushed onto the ward at lunchtime with two medical students. He spoke over us pointing out fasiculations to the students. There wasn't enough time to communicate as an iPad provided by the speech therapist was necessary and it was slow. From this visual examination he confirmed the suspected diagnosis, advised it was terminal and, apart from Riluzole, there was nothing else to offer. He provided contact details for the MNDA and the hospice, leading us to believe death was imminent. When we started to cry he looked in discomfort, asked if there were any questions and all but ran out of the room with the sheepish students following him.

Some months later the respiratory team were marvellous although they advised a PEG and/or breathing mask was not appropriate. Apart from measurement of oxygen levels nothing was done or suggested.

The speech therapist had nothing else to offer after the iPad, which was used successfully for just a few months. We then paid for a laptop ourselves and MNDA funded the licence for Grid2 software, which was brilliant to be able to text and email.

The promised environmental controls that could have improved quality of life didn't arrive in time despite an assessment 3 months earlier.

Despite most of the literature saying MND is not usually painful, this was very much the case throughout in addition to everything else.

If there was anything that could have been better it would have been a specialist MND nurse to be with us at diagnosis and on the end of a telephone for advice. We never saw or spoke with one. The Nursing Home had never nursed anyone with MND before although they did their best.

Hi Candle;

I am sorry to read of your Mnd journey, it sounds a particularly arduous. Good not agree more with you, in that they should have someone with you to help you both when being told of the Diagnoses.

I am guessing that you husband had a rapid type and ended up in a care home, please correct me if i'm wrong,

Despite all of this, I would like to welcome you to the forum.

Regards Terry

respphysio
11th December 2014, 11:15
Thx Terry and Candle.
I will bring this up too.
R

Candle
11th December 2014, 21:46
Thanks for the welcome Terry. It was as you say very quick, although it was my mum who had to suffer.

Terry
11th December 2014, 22:49
I'm sorry to hear about your Mum, Candle;

Hi R;

Often, the way the diagnoses is given is quite inappropriate, in fact it is very normal to be informed in bad way, even a few here have just had a letter. I know there's no nice way but as Candle so rightly says, to have someone else from the hospital that would stay with you for an hour afterwards or till you get in the car would be so nice. They could act as a go between and provide moral support.

In Ipswich we did have then a Neurological nurse, (we have not had one for four years now) but I did not make contact till later.

You would think that Neurological (that's brain people) would know the right'ish way to break the bad news but in probably over 50% of the cases this is not so.

Regards Terry

Jock
12th December 2014, 10:53
I'd like to second Rachel's idea "UK research into the potential benefits of supplements.". What works for the goose may not/does not work for the gander.

A lot of the problems raised in this thread I don't experience in NW Wales. I got my wheelchair fast, I don't have to wait days on end to see my OT and my 'team' are caring. Yes, I got a letter confirming MND, but that saved me yet another visit a month or so down the road. I waited long enough to know the truth so I was 'happy' the Neurologist wrote.

Springtime
12th December 2014, 12:43
Hi All, Candle, sorry to read about your experience, the way you were all told is unforgivable most insensative. We had exactly the opposite. My husband was supposed to be admitted for tests but owing to a shortage of beds at Liverpool they were unable to take him, however a very quick thinking, practial lady (Dr Fletchers Secretary) had told us if the case was a shortage of beds we were to still go in to hospital as the tests were booked. So he went in, and Jim was given various tests throughout the day and then we came home. Dr Fletcher rang us to ask us to go in to the hospital 2 days later, which we did. He came in to see us with the MND Nurse, and as gently, honestly and with much sensitivity gave us the diagnosis of MND. We, as a family were given lots of time to ask questions and collect our thoughts together before we went home. I have nothing but praise for the the team as The Walton Centre, Liverpool and we received exactly the same sort of caring honesty, when he was admitted to the Respiratory Ward 19 at Aintree, Liverpool. Hugs to you and your Mum Candle. Spring x

Candle
12th December 2014, 19:04
Thank you Springtime, although my mum passed last month. The neurologist was also from Walton so perhaps we were unlucky. Two appointments were cancelled before we eventually saw him on a side ward at a local hospital.

Graham
30th December 2014, 18:38
Hi Ruth,

I have been wondering what the Commissioners thought of your presentation?

Some of us, including myself, continue to have a torrid time and the NHS and social services really aren't fit for purpose as far as MND goes.

Regards

Graham

bakeit Forum