CC - It's called Post Code Lottery. Each regional NHS organisation has their own rules and requirements. Someone just a few miles down the road, across a county border, might get a completely different level of care for the same condition, just because they fall under the rules of a different NHS organisation.

Boiler - One of the things that makes MND so very difficult to treat, from the point of view of designing support services for it, is how much it differs from person to person. It's difficult to diagnose, and once diagnosed, impossible to predict, and people who mostly support other conditions just don't get how debilitating it is. (I'm sure you know all that)

Earlier this year I was trying to get my housemate an appointment with the wheelchair services organisation to upgrade her wheelchair. They kept giving her early morning appointments. And I kept phoning them up, and explaining that it can take 2-3 hours to get her awake and ready to go out the door, and as she doesn't sleep well, she doesn't wake up easily before 11:00. So a 9am or 10am appointment is impossible to make, and is very stressful for everyone. They would tell me 'no problem, we have afternoon appointments, we'll give her one of them'. Then, the next week a letter would arrive for a 09:30 appointment. I gave up in the end.

Usually, helping her with a bed pan takes 30-45 minutes, if everything goes smoothly. Last night, it took 90 minutes. Organisations just don't seem to grasp how difficult and time consuming simple tasks can take when you have MND. Even those that expressly support MND patients. It's infuriating.

One of my frustrations now is that my housemate has only seen her MND consultant once this year, because every time he books an appointment for her, she's had a bad night, or is in too much pain to travel, and we cancel. Here's what is involved in going to the hospital for a 15 minute appointment with a consultant in his office - no medical checks, no scans, just a 15 minute chat in an office.

- first, an ambulance is booked and they give us a 2 hour window when they might arrive. So if the appointment is at 11:00, the ambulance could arrive at 9am.
- If we budget 2 hours to get my housemate ready, that means she needs to be awake at 7am. She's not a morning person, and it takes her awhile to wake up, and for her body to demand bodily functions. So, she might ask for a bed pan around 8am, right at shift change for our carers.
- It can take 30-90 minutes to do a bed pan.
- And let's not forget 20 minutes to do morning meds, plus set up her feed. Want to get some feed in her before she goes out.
- Ambulance takes her to hospital, she has her 15 minute appointment - remember she could have already been on a stiff stretcher for 2 hours by this point.
- Ambulance trip back home.
- Move back to her bed,
- lunch time meds,
- bed pan, etc. etc.

A 15 minute appointment can take 6-8 hours of our day to attend, and will take my housemate 2 days to recover her energy from. What pisses me off, is why can't the consultant drive to our house (a 20 minute trip from the hospital) have his 15 minute appointment in the comfort of our living room, we'd even offer him a coffee, then he could return to work. That would be so much easier.

I am doing my best to educate the services that support my housemate to what her requirements actually are, like the above. I write letters of complaint all the time. I used to work in the NHS, and understand a bit how they work. It is very much a rule of, 'The squeaky wheel gets the grease.' If you don't make a fuss, they won't listen to you, and will just do the standard stuff they do. You have to make your voice heard, document what is required, and show them proof of how challenging your needs are. File an official complaint with PALS, and follow it up. Scream, shout and jump up and down, and then you might get some of the services you require. Get to know the people caring for you as well, get to know them on a first name basis. Be nice to them, get them on your side.

Boiler, your hubby was on the loo. Now, I know what a person who has full use of their body thinks that means. What you have to do is get them to understand what that means for a person whose body doesn't work. How long does it take? 30 minutes? 45? 60? Think of it like when you're filling out benefits forms. Take the absolute worst case scenario, and write it up as if that is the normal, base line requirement.

Before my housemate was bed bound, a trip to the loo would go like this:
- put on splints (20 minutes)
- Lift up in stand aid and move to wheelchair (5 minutes)
- Take her and stand aid to toilet (5 minutes)
- Lift up in stand aid and transfer to toilet (5 minutes)
- Give her privacy for 10-20 minutes as required (20 minutes)
- Clean her up, return to wheelchair (10 minutes)
- Return to living room (5 minutes)
- Lift in stand aid and return to chair (5 minutes
- Remove splints and get her comfortable (15 minutes)

90 minutes on average. And that was a 'by the book' scenario. We never actually used the wheelchair to move her from one room to the next, we just did it in the stand aid because there was no room in the house we used to live in to do it that way. We were told that was wrong, but had little choice. But still, I would document it 'by the book' way, and stress how long a simple task takes.

If you can document a week's activities to this level of detail, then you can start to build a case for more support, and for getting people to understand why you missed an appointment on short notice. The NHS is doing a big push at the moment against people not showing up for appointments. So phoning them before the appointment, even 5 minutes before, keeps you off their naughty list.

Pen