General frustrations

[Music man's wife]

Just reading of the ever increasing poor care and services received by MND sufferers makes me think is there something the MNDA can do?
Whether it's a campaign, writing to the Secretary of State just something!

[denise]

You would think so but then my husband has also needed help with dementia (ftd) and that's worse. Makes me think things are bad across the whole system. This is not a good time to need help.

[Maria C]

It’s no better in Canada. There are too many people involved in my care who don’t understand the disease, services are underfunded and poorly delivered, and getting equipment takes ages.

I wish things were better for everyone dealing with this horrible disease.

[shelly21]

I said the same denise that I picked the wrong time to be diagnosed with a complex terminal illness 😁.

The mnda got involved when I was first diagnosed. My gp had not been told of my diagnosis and no referrals were done for weeks. They alerted my gp who then called me apologising and they would refer me ASAP.

[TinyLady]

We have no funding in our county for any MND support. It's awful. I do feel this is such a bad time to need help. We also can't afford my husband to stop working or go part time, in our 40's we have a large mortgage and children to support.

[Betty May]

It is terrible to know how badly people are let down by the very services that are supposed to help them. And how many others are suffering from neglect that we don't hear from?

One of the things that few professionals seem to understand is the speed at which the disease can progress, and how unpredictable it is. And yet even when this is explained they seem to think it's quite OK to wait for somebody to end up on the floor before they supply them the means to get in and out of a chair/bed safely. Or perfectly acceptable to expect somebody to stay in bed and soil themselves for several days while they wait for a hoist so that they can use a commode or get to their toilet. Because saving money is more important than helping dying people, right?

Cruel. Immoral.

We were able to manage my husband's care at home between the two of us, and between equipment, professional medical support and technology, he was able to make the most of every day, interact with people, and have a life, even when he was completely dependent. He was treated with respect and consideration, and he was grateful for that and bravely prepared for each new loss of ability, knowing that he would have support. It was a huge, huge blessing and meant we could face the disease with courage.

Despite all this, I was exhausted. Living with MND even with the best of care is full-on, constantly managing symptoms and adjusting care to avoid crises, always on a downward slope. Not to mention the weight of natural grief at losing each other. There is NO WAY that either of us would have managed to do what some people on these forums are forced to do, and that's fight for equipment, care, funding, trying to navigate benefits systems and constantly chase people up. It needs to change, it's utterly, utterly wrong.

[TinyLady]

Thank you for you post Betty May, you said exactly how I feel. It is about time ALL of us were treated consistently with care and respect. There should be no need to battle or chase. It is cruel and immoral and I for one can tell you it saps you of any energy you do have and leaves you feeling worthless.

But how do we make our voices heard?

[shelly21]

Betty May that support you both had was what I imagined would be re my care. Unfortunately no mnd nurse in my health authority. What I do have is poor.

But it is lovely reading your story and I'm so glad you had that for you. X

[Betty May]

TinyLady I don't know. Perhaps all the MND charities across the UK could get together to raise lots of public awareness as an ongoing campaign - that might be a start? - yes we keep being told there is a crisis in the care system, but that doesn't mean we should shut up and put up. In fact, we shouldn't. Constant public pressure, as high-profile as we can get it, and refusing to let the subject be dropped and forgotten, reporting on people's awful situations and what they are going through, however long it takes to get results.

In my opinion, everybody in the UK should have an MND nurse - they are the main, proactive, on-the-ground specialists who can advise, sympathise, request prescriptions, make referrals, write letters of support to insurance/pension companies, etc.

Everybody should get a DS1500 straight away - I don't mean leave the neurologists office with it, or even that it needs to be mentioned when the diagnosis is given, but it should be issued without dispute. Our nurse had ours and had requested the blue badge for my husband and put a referral into the council whilst we were still in a daze from the diagnosis. I didn't actually see it for several months when I needed to forward it to someone.

Councils shouldn't be allowed to smugly walk away from a situation just because ceilings are too high, or costs are too high, or access to the house means that a needed ramp contravenes health and safety specifications by a few millimetres or so. They need to find solutions, and that doesn't mean sticking a kettle in a bedroom upstairs, or telling somebody they will need to sleep in the living room, unless the patient is OK with that.

Priority should mean NOW, not wait until the next panel next month and then three quotes and before you know it six months down the line the patient hasn't had a shower for five months and nobody's pulling their finger out!!

In the meantime... MND Scotland have advocates to help those who are having to fight for the care/equipment they need - do the MNDA have the same?


shelly21

Thanks Shelly. Reading of people's struggles on here, and looking back at our experience, I am so grateful. I would like to be able to say to newly diagnosed people that life can still be good and positive after diagnosis, but I can't imagine it being good or positive without the right support. My husband was twelve years in the Royal Artillery and he remarked several times that he'd served for the UK, not for the local area - it really bothered him that in some areas people are just callously left to struggle, expending precious energy on fights they shouldn't have to engage in. He was really keen to take part in the MND Smart trial too, hoping that it would slow things down but believing that even if it didn't help him, he would be able to contribute to helping future MND sufferers.

[shelly21]

Betty May i was 7 yrs army, 22 yr police so I really understand your partners views. I love your zest and anger regarding the care that should be available. I'm of the viewpoint that its also down to lazy professionals who just can't be bothered. I was actually told by a therapist that I would get nothing from my OT because she is due to retire. I gave her the benefit of the doubt, but true enough I got zilch.

My friend contacted the British legion and police re donations...zilch. I didn't expect it and wasn't at all surprised x

[Arcadian]

I have some previous experience with a non-life threatening serious incurable illness from 15 years ago.
I really notice the negative difference in access to medical professional resources and coordination the last 2 years with an MND diagnostic journey, compared to back then.
Really feel for anybody weary from having to push against indifference and dismissal or with no prior experience of long-term health service interfacing.

I'm seeing locally to me a handful of younger people (under 30) having an absolute nightmare of being taken seriously for over a year before active diagnostic efforts.

I have found the MNDA website helpful for reliable info and local regional branch very handy for a structured 'guidance' on communicating with med professionals.

[TinyLady]

I don't know if I even dare disclose my latest. Today was so awful that I am seriously wondering if I am either in a very cruel prank or a total nightmare. My blows are coming thick and fast now.

[Music man's wife]

So sorry TL, let's hope tomorrow is much much better xxxxx

[Ellie]

TinyLady Really hard to hear your situation has got even worse 😟😟💖

[TinyLady]

Music man's wife, Ellie - it was like this - yesterday I was drowning and begging for help (literally).... i got thrown an inflatable dinghy.... only to find they had slashed the bottom.

I'm hanging on to the scraps and refusing to let go. I have requested another dinghy.....

Tomorrow is a fresh day xx