View Full Version : Where do we turn now and who is willing to help?

28th June 2011, 21:56

I am looking for any help/advice that I can get please. My dad has Bulbar MND and is 2+ yrs down this road. He is no longer able to speak,eat,drink and is rapidly losing his mobility, also his neck has lost most of it's strength. Dad had a PEG fitted last October thank goodness and is doing well on this, although so far has lost 4 stone and is very frail.

I have had a very frustrating few days with both mum and dad and trying to get the right care in palce for him and support for mum. Every time we ask for help, we are getting let down time and time again. My dad has now not slept for well over a week and we are really worried that he is going to have a fall due to his extreme tiredness.He is understandably fed up and very low in spirits. I have today taken him to see his GP, who upon eximanation has said that he now need O2 to help him as his breathing is getting very shallow and he is not getting enough oxygen into his system. This was all arranged on an urgent order and I even spoke to the comapny that would supply the oxygen to him. They said it would be done last afternoon/early evening. I have just had a call from my distressed mother to say that when she called to see what time they were coming (as they have been waiting 5hrs since the call) she was told that just after speaking to myself, the surgery called them and cancelled the order. Guess what, no one thought to call mum and dad and inform them or give them any reasons for this rapid change of events. The only person who has examined dad today was the Dr that ordered the O2 so I am keen to know who cancelled the order without even having seen m father and the condition he is in. Is there anyone else who is on oxygen or who has any experience with it?

Also we have been waiting in vain for a Palliative Care referral for the last 6wks only to be told that nothing has been arranged! After speaking with the MNDA who have been fantastic and very helpful in arranging an urgent referral. Mum spoke to a member of the Sue Ryder team today, she was told that the lady assigend to them has no MND experience of any kind, which is not a lot of help as mum wants to know what to look out for and when to call for assistance. She also wants to know what is still to come (we are aware that eveyone person is different in how they are affected) As a family we are very keen to get an advanced Directive in place as dad wishes to remain at home completly. Again we spoke about this some 6wks ago at a hospital appt and were told someone would help in getting this in place, again nothing is happening.

Mum and I seem to be spending so much time on the phone chasing people asking for the most basic help only to hit a wall every time. My parents are so distressed and mum has said that she just feels like giving up with all health care professionals as no one wants to help them. I am so saddened by the events that keep happening as they are having a devastating effect on all of our lives. As things stand both of them are at breaking point and I do not know where else to turn. Has anyone else had any of these things happen to them? I am sorry if this seems waffly and a bit all over the place but I am struggling to stay positive and am desperate to smooth things over and get the right people in place to help them. I am doing all I can inbetween juggling a young family & working. I just dont know where else to try as no one seems to see the whole picture.

Thank you for giving me the chance to let off some steam and rant. I am normally a very rational person, honest xxx

29th June 2011, 00:28
Hi -

I'd suggest that you speak to MND Connect as a matter of urgency and ask their advice, because I think you need a 'plan' to work to in order to make progress. I know you have spoken to them before and things haven't worked out - but have you told the Connect team about your latest problems or updated them about what has happened since your first enquiry?

I'm sure they can be of further help in getting things moving for you, in particular the non-arrival of your promised oxygen supply. I also think you should speak to the MND Association regional care development adviser (RCDA) for your area. The RCDAs work together with the MND care centres and, because they are closer to the patients' home area, will often have local knowledge and a good idea about where to focus attention to gain results.

The list of Regional Care Development Advisers and their contact details can be found here:
http://www.mndassociation.org/for_professionals/local_support/regional_care.html (right click and select 'Open Link in New Tab' to keep this Forum page open).

Good luck with everything,


29th June 2011, 00:56

my mum has bulbar onset MND too.

It may be worth asking MNDA or someone that you may be linked in with to ask for one person to be designated to assist the care planning;
may also be worth asking the GP surgery to be on the gold standard framework and hopefully would not get something so serious being cancelled.

It may also be worth asking the social services adult care team to assist with providing an assessment as it seems that your dad may be in critical need, carers assessments are also a right.

Yes, it can be a battle to get access to the right help. Have you asked the neurologist for a referral to palliative care? If you have a hospice nearby then perhaps call them directly and ask the best way to access their service. We had to ask a number of people a few times re access to palliative care referral but now mum has one and she comes at least once a month (more if mum wants) and is getting to know mum

re the advance directive- the MNDA have a pack on this and you can complete it by hand and then update it as things changed. Mum completed one with me and then she took it to the GP and went through it (GP signed) then we told all the health workers involved such as speech therapist, MND nurse, OT, palliative care, dentist, physio (and gave them all a copy) - a copy was then given to the amubulance service so that they are aware of mums wishes should they be called in an emergency. I would suggest that MNDA could email you the form if you ask them- if not, i can look at what pack it will be in (i know it is in the bigger personal guide). You dont have to wait for someone to do it with you- but obviously it helps to have someone with an understanding of MND to go through it and explore with your dad what he may want to [ut in. We also applied for lasting power of attorney on health and welfare and financial matters and this is all in place with the office for the public guardian- however we have not activated it since mum is able to communicate. My hope is that even when she cannot speak she can still be involved to make her decisions. Once power of attorney is activated then the advance directive is superseeded (but of course you would need to keep to your relatives wishes and in the power of attorney your dad could spell out what his decisions would be.

If your dad is loosing his mobility does he have assistance with walking aids or a wheelchair (these may be able to be funded). My mum had a lift installed last week (a marvelous thing from the dining room to the bedroom)- however it has taken about 7 months from when she was deemed to be in "critical need"- however we subsequenntly found out that the person wanting the adaptation or their representative can ring the major adaptations team in the city council and this would really speed things along.

My mum can speak but is is getting very hard to understand, she has severe difficulties eating and drinking but has decided that she does not want a PEG.
all the best- keep fighting and perhaps you can bring a whole team of people on board to fight for your dad and his rights so that it is not all on your shoulders or your mum. Please urge your mum not to give up with the health professionals as they need to do more to make sure the whole family can cope- if you give up with them then perhaps they will just let you all get on with it and you and your dad wont get the help that should be available- dont let them cop out!

29th June 2011, 18:46
Hi there,
So sorry to hear your rotten situation. I have experienced extreme frustration with some of the support agencies but things have improved dramatically since my local hospice have become involved. Although they are not MND specialists they have stepped in and fought my corner for me and pushed for situations to be resolved. I didnt realise that their remit was as wide as it is and they have really lessened our burden. Are your hospice aware of the crisis you are experiencing?
kind regards, vanessa

29th June 2011, 20:05
Hi Justaboutsane,

MacMillan nurses will step in at short notice.

I share your outrage at the lamentable support you are receiving.

Keep us informed on your situation.

Best wishes


Ange M
29th June 2011, 20:27
I had the backing of my local District Nurses, who came out/phoned every month incase there was anything I needed fro Steve, also they were a back door into the GPs if required.
Macmillan nurses were the same and I also had input from the Marie Curie rapid response team.

29th June 2011, 21:54
Hello to you all above

Firstly thank you for all the advice and support it is very welcome.

I am pleased to report that after a very firm phone call this morning, i have been able to arrange the District Nurses to visit, delivery of oxygen, several calls from my parents own GP (no mean feat i can tell you) and plans are now coming together so that we can make sure that my dad gets to stay at home where he wants to be.

Yesterday was a true day from hell, everything was just working against us and falling apart. I know that a few heads are going to roll over some of the issues that I have reported today. I am not one for making problems for other but just wanted to ensure that my dad gets the care that he is entitled to and deserves. FINALLY we have been listened to and the whole day has been a hive of activity.

I will be looking into all of the advice above and am sure that most if not all of it is going to be really helpful in getting the rest done.

My parents are now feeling a little more relaxed this evening and dad has even managed a few smiles, which is something i have not seen all week.

I have to say that i cannot praise the MNDA enough. Just hearing a claming voice at the end of the phone that is willing to listen and taken your fears and issues from you and help to sort them is an amazing feeling. I am very grateful for this and would recommend anyone calling them when they are in need. I am quietly confident (don't want to say it too loud in case i jinx the progress) that everything is going to flow more freely now. The services have sat up and are now aware of my dad and know that he is is need now and not in a few weeks or when they can spare the time. Time is something that we are all aware of and we just want to ensure that it is spent doing the things that give quality dads life not prohibit it.

Once again, thank you all for listening to me and bless you all xxxx

30th June 2011, 00:08
Great to hear that things are moving at last for your Dad. And well done you!!

Best wishes again,


Newcastle Lot
16th July 2011, 19:19
My mother has the same thing and I can empathise with you totally. The difference is that at least my mother is being well cared for all round. She goes to our local hospice once a week and she finds it very helpful and theraputic. She is having cognitive behaviour therapy to help with her mood as antidepressants don't suit her. It might be another avenue to explore - as soon as they ring one of the other services, they seem to jump to it and get on with it. They chase everyone up for you.
I know we are carers but we are also the children of our much loved parents and it can be difficult to cope with when you have many other commitments which take up you time and give you other stresses.
Take care and use everyone who is available - lots of people do want to help

MND Connect helpline