Light touch bed controls? what to expect from your OT service? And changing hospices?

[Guest]

Hi, My mum has just got her profiling bed and she can't push the buttons on the controler. She can just about hold the device but has no power in her fingers or thumb to press the buttons.
Has anyone had experience of a super light touch remote for a profiling bed?
This is a community bed so we haven't purchased it, so if I could find an alternative I'd ask the OT to see if they could source one for her.
Some other questions with regards to your OT in your area:-
*How supportive do you find your OT?
*Does your OT always come out to assess you before they order new equipment?
*Does your OT come out to see how you are getting on with any new equipment sent and to show you how to use it?

Also Do you have access to a community nurse for symptom management in your area?

I'm trying to establish what sort of support we should expect for Mum. She's struggling with pain, constipation, nausea and eating, all affecting her energy level and weight loss.
When my mum recently rang her hospice the OT said that the Hospice was predominantly for cancer patients so if she wanted a nurse she had to go to the gp. The gp practice wouldn't send out a nurse untill she'd had a home visit from a Dr. They did send a Dr out who examined her and told her to tweek some medication and go in to see a gp if it didn't improve. So no community nurse visits set up it's just back to trying to get appointments at the gp practice which takes weeks to get. Its such a challenge all the time to get any help which is so hard when mum's condition is changing so rapidly. I'm just wondering what services we should expect and if the Hospice should really be more supportive considering mum should really come under end of life care regardless of the fact she doesn't have cancer, she still has this cruel life limiting condition.
We live in kettering, northamptonshire, Northampton itself has a wonderful hospice and it's only 25mins down the road I'm just wondering if it's possible to ask to have her care transferred to there rather than Kettering who are very unsupportive? Are We allowed to choose the Hospice we want to go to? Does anyone have experience of changing hospice care to a different hospice in the same county?

Sorry for so many questions on a variety of topics.

[johnburton]

I have a hospital bed provided by the NHS, but have enough power in my hands to operate the buttons. I have found a hospital bed that I could buy privately that uses infrared controls and so could be interfaced to and operated by an eye gaze tablet. It's something I'm considering for later.

I have had little OT support in West Berkshire, but otherwise the NHS and the local MNDA team have been extremely supportive. I have bought most off the equipment I use, apart from the bed and a power wheelchair.

I am taking Movicol for constipation, it being a stool softener rather than a laxative.

I have no experience of hospices, although I know there are good ones in the area.

[Ellie]

Hi Jude,

I’m so sorry your mum is struggling unnecessarily, which obviously is very distressing for you.

To address some of your points:

Bed controls - In the short-term I wonder if building up the buttons would make them easier to press? By this I mean putting a lump of Blu Tack, or similar, with an old button on top of the flat push-button control. I did this at your mum’s stage and used the heel of my hand, rather than fingers or thumbs, to press down. Or she may find a knuckle easier.

Longer term, yes there are beds controls which interact with eye gaze environmental controls or switches, but you may find getting a compatible bed hard or her current control may be suitable. It’s worth asking the SLT at mum’s next Clinic appointment.

OT - I am in a different health service but wherever one is, yes, most definitely people should be assessed by the OT before ordering any equipment, be it cutlery or a wheelchair. Obviously a person needs to be shown how to use a wheelchair, hoist etc. and not a spoon, nor will the equipment necessarily be demonstrated by the ordering OT but by the person delivering the equipment. That said, it is vital that wheelchairs, hoists etc. are set up to the user’s height, leg & arm length and individual specifications.

Hospice - What a poor response from mum’s local hospice Hospices are for people with “life limiting conditions” so that definitely covers her. You said your mum spoke to the hospice OT, I wonder if this is right? If she didn’t speak to Nursing, she should. Referrals can be made by her GP, community nurse or, given their inaction, the MND Clinic or her MND nurse I daresay.

Your mum would benefit from a short inpatient stay for “symptom control”, i.e. her pain and constipation etc. If none of the above people are willing to help, contact the MND Connect Helpline as your mum should have access to a hospice.

Feeding - I know this came up a year ago but did your mum get a feeding tube? If she’s struggling to eat and is losing weight her energy levels are bound to be low - I was going to ask if a Dietitian or an SLT have assessed her recently, but I guess she hasn't been?

When is her next Clinic appointment?

Take care.

Love Ellie.

[Kayleigh]

Hello Jude,

Sorry that your mum isn't receiving all the support from an OT and hospice etc that she should be. Hopefully MND Connect and your Regional Care Development Adviser will be able to help with sorting out these issues.

You might already be aware that your local Adviser (for Central Midlands including Northamptonshire) is Scott Maloney:-

https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

Love and best wishes,
Kayleigh x

[Guest]

Hi Jude,

I’m so sorry your mum is struggling unnecessarily, which obviously is very distressing for you.

To address some of your points:

Bed controls - In the short-term I wonder if building up the buttons would make them easier to press? By this I mean putting a lump of Blu Tack, or similar, with an old button on top of the flat push-button control. I did this at your mum’s stage and used the heel of my hand, rather than fingers or thumbs, to press down. Or she may find a knuckle easier.

Longer term, yes there are beds controls which interact with eye gaze environmental controls or switches, but you may find getting a compatible bed hard or her current control may be suitable. It’s worth asking the SLT at mum’s next Clinic appointment.

OT - I am in a different health service but wherever one is, yes, most definitely people should be assessed by the OT before ordering any equipment, be it cutlery or a wheelchair. Obviously a person needs to be shown how to use a wheelchair, hoist etc. and not a spoon, nor will the equipment necessarily be demonstrated by the ordering OT but by the person delivering the equipment. That said, it is vital that wheelchairs, hoists etc. are set up to the user’s height, leg & arm length and individual specifications.

Hospice - What a poor response from mum’s local hospice Hospices are for people with “life limiting conditions” so that definitely covers her. You said your mum spoke to the hospice OT, I wonder if this is right? If she didn’t speak to Nursing, she should. Referrals can be made by her GP, community nurse or, given their inaction, the MND Clinic or her MND nurse I daresay.

Your mum would benefit from a short inpatient stay for “symptom control”, i.e. her pain and constipation etc. If none of the above people are willing to help, contact the MND Connect Helpline as your mum should have access to a hospice.

Feeding - I know this came up a year ago but did your mum get a feeding tube? If she’s struggling to eat and is losing weight her energy levels are bound to be low - I was going to ask if a Dietitian or an SLT have assessed her recently, but I guess she hasn't been?

When is her next Clinic appointment?

Take care.

Love Ellie.

Hi Ellie,
Mum no longer goes to an MND clinic. There in lies her problem I think. She did go to Nottingham at first who were great but then it was decided the 2.5hr journey was too much and they suggested her care be swapped to the local hospice 5mins down the road. We were told she would have access to everything she needed.so she no longer has an mnd team or MND link nurse. She goes to the hospice Dr every 3months when an OT or physio takes notes but hardly ever gives any in put.
It was decided 4wks ago at her appointment they would send out a dietition to show mum a feeding tube and SALT team to assess her as she has never been assessed so far. Also they would send out OT to do an environmental assessment as she has never had one and do the CHC funding assessment. 4weeks on and we have only had responce from dietition who is comming in 2 weeks nothing from the OT or SALT teams.
I think she needs to have a nurse visit but the Hospice told her their nurses are for cancer patients and the gp's said they only send a nurse out after a gp has been out. The gp came and said come to gp surgery if bowels are no better soon and so no nurse follow up arranged. What she needs is access to community nurse for symptom management but we just dont seem to be able to get access.
Its a mess for her and I feel powerless to improve it for her. She seems to get no support at all.
Thanks for the tip about buttons I'll give it a go.
Sorry for going on but hope you can understand my frustration.

[Guest]

Hello Jude,

Sorry that your mum isn't receiving all the support from an OT and hospice etc that she should be. Hopefully MND Connect and your Regional Care Development Adviser will be able to help with sorting out these issues.

You might already be aware that your local Adviser (for Central Midlands including Northamptonshire) is Scott Maloney:-

https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

Love and best wishes,
Kayleigh x

Thanks for you reply, yes I've spoken to Scot befor and he is aware of our plight with hospice. I might call him to ask him about swapping mum's care to a hospice in Northampton as they seem to be more supportive when She went for the day for a breathing meeting.
The OT never comes to see mum at home and has ordered bits and bobs for her remotely, so like with the bed, she wasn't assessed the bed just arrived. Not sure mum can cope with the air mattress as the ridges blow up every 14 mins and press painfully on her spinal stenosis soci don't think it's the right mattress for her. While I understand it's to top rated one for pressure care it's not comfortable for her as she is at present. I guess we shall have a battle on our hands to get it changed.
Some thing to look forward to after the bank holiday as won't get any joy now till Tuesday.

Thanks for you supportive post.

[Guest]

I have a hospital bed provided by the NHS, but have enough power in my hands to operate the buttons. I have found a hospital bed that I could buy privately that uses infrared controls and so could be interfaced to and operated by an eye gaze tablet. It's something I'm considering for later.

I have had little OT support in West Berkshire, but otherwise the NHS and the local MNDA team have been extremely supportive. I have bought most off the equipment I use, apart from the bed and a power wheelchair.

I am taking Movicol for constipation, it being a stool softener rather than a laxative.

I have no experience of hospices, although I know there are good ones in the area.

Thanks for you post John, seems were on our own with it as you seem to be too.
Take care x

[Barry52]

Hi Jude,

You may want to look at this MNDA link showing the care centres. I would think Cambridge or Birmingham is nearer than Nottingham.

https://www.mndassociation.org/wp-content/uploads/2015/07/03a-mnd-care-centres-and-networks.pdf

Best wishes,
Barry

[Ellie]

Thanks for the explanation Jude.

Yes I agree that maybe a different hospice may be better, as well as trying hard to get the community nurse involved (I'm at a loss as to why it's such a palaver for your mum to access one) Ideally she'd have someone overseeing her care which wouldn't involve an exhausting and uncomfortable 2.5hr roundtrip!

Not sure mum can cope with the air mattress as the ridges blow up every 14 mins and press painfully on her spinal stenosis soci don't think it's the right mattress for her. While I understand it's to top rated one for pressure care it's not comfortable for her as she is at present.

Jude, are you sure the pressure / firmness of the mattress can't be lowered? Look at the control panel and see if there is a + and - button for weight or pressure. She shouldn't feel the ridges of the mattress - if the pressure can't be adjusted, she needs a different mattress. If you're unsure, what mattress is it and I can look it up. (I spent one very uncomfortable night on a mattress feeling ridges and I've no spinal issues, so IDK how your poor mum copes . I got a weight adjustable mattress which is very comfortable)

Also, a 14 minute rotation seems long when at high risk of pressure sores.

Hope she gets sorted soon - I think you'll be busy on the phone from Tuesday!!

Love Ellie.

[Guest]

Hi Ellie
I've decided after the bank holiday I'm going to call our gp surgery and ask the practice manager if mum can be referred to the community nurse or at least find out exactly what sort of support we should expect for Mum.
Her mattress has 2 settings high and low pressure and if you turn the pump off the mattress on its own is surposed to be a level 5 pressure care so she has turned the pump off as even on the low setting the ridges are too painful for her. I think we need to tell the OT it's not the right sort of mattress for Mum. It's a mercury dynamic mattress and doesn't have any settings for body weight. In my opinion this is what happens when an OT orders equipment without assessing the patient first and not visiting to see if the equipment that's delivered is right and usable.
It seems so unfair when you have to fight for the right equipment and care when you are suffering from a rapidly deteriorating life limiting condition. It's so exhausting but I shall keep fighting for her as much as possible to get the right equipment and care she deserves.

Thanks to everyone who has messaged me with tips and ideas for my mum, love to all x

[Ellie]

Yes, that mattress is doing her no favours.

Given your mum's stenosis in addition to MND, she really needs one without foam.

Best of luck getting the nurse.

Love Ellie.

[Terry]

Hi Jude;

Make sure your mum is not constipated at all costs. Don't know how often your mum goes but for me if it went on for three days I would take some suppositories. Constipation early on after diagnoses along with ingesting something into the lungs later on are probably the two main risks.

Ring Mnda connect tomorrow and ask them to try and sort out some support for her so that you're not fighting alone and in the wrong directions.

Hospices and Macmillan nurses don't just deal with cancer, perhaps 75% of there time is spent on that.

Love Terry

[Terry]

Hi Jude;

Years ago I was involved with the design and installation of a room in the hospice that had bed, curtain, window, light, TV and alarm call. This was all controlled from a single switch that could be operated by various methods. It was called, Possum and there web site is here:- http://www.possum.co.uk/products/newfreeway/

http://www.possum.co.uk/products/hc1823/

There are other companies doing a similar thing.

Love Terry

[Guest]

Thanks Terry

Hi Jude;

Make sure your mum is not constipated at all costs. Don't know how often your mum goes but for me if it went on for three days I would take some suppositories. Constipation early on after diagnoses along with ingesting something into the lungs later on are probably the two main risks.

Ring Mnda connect tomorrow and ask them to try and sort out some support for her so that you're not fighting alone and in the wrong directions.

Hospices and Macmillan nurses don't just deal with cancer, perhaps 75% of there time is spent on that.

Love Terry

Hi Terry, thanks for your message. I know that the hospice are surposed to deal with any end of life care not only cancer but the OT was very abrupt as she always is and plainly said to mum when mum asked for nursing help that "you do know the nurses at the hospice are predominantly for cancer patients" not a helpful answer when mum has not been to the loo for the last 5 days and feeling very unwell.
My sister is going to make some calls for us tomorrow, so watch this space. Thanks for your second post Terry with the web sites to look into.
Much appreciated, Jude x

[miranda]

Is your mum under the care of the Oxford MND centre at John Radcliffe Hospital? Rachael Marsden the specialist nurse clinic co-ordinator might be able to advise you.