It’s been just over a week since my wife was discharged from hospital.
Number of times a Physiotherapist has contacted us or called round: None
Number of times an Occupational Therapist has done the same: None
Same for the Multiple Sclerosis Nurses: None
District Nurses: Twice (but only because I refused to do her daily injection until they did proper Pressure area care)
Pain Management? No.
Social Services? Nope, none of them either
Any other NHS professionals? No
We do get 2 carers who call in 3 times a day for personal care. They are great. This care is ‘free’ for 6 weeks (from some arbitrary point we have been unable to determine – fall? or the discharge) after which we have to pay.
J’s left leg is the broken one. It’s always been hardest hit by the MS. The MS Nurse should know this so why has she not told the physio to concentrate on the right leg? No idea.
Why has the OT not visited to assess the home environment?
Why is my wife still struggling with pain?
What is the point of Social Services?
What really is the point of a Multiple Sclerosis Nurse? (Answer? NONE)
It is hugely frustrating here right now. As far as the NHS is concerned a target was hit – a ‘broken hip’ was discharged home within the allotted time frame. And now no-one in the NHS gives a flying fuck about anything.
And there is so little we can do. We have to accept whatever we are given.
Right now the ‘free care’ will disappear and then what? We have absolutely no idea at all.
Can someone please kill Jeremy Hunt and David Cameron? That might get some motivation going – assassinations should make a comeback. (Yes, that is an incitement to violence. Sue me).
Debbie Purdy, who won a landmark ruling to clarify the law on assisted suicide, has died at the age of 51. Guardian.
That she had to starve herself her death because the law and our so called ‘civilised’ society is so wrong, so very very wrong.
“It’s not a matter of wanting to end my life, it’s a matter of not wanting my life to be this.”
Assisted suicide should be legislated for.
My complaint to University Hospitals of Leicester NHS Trust resulted in an MS Nurse visiting us last week.
Here is how I imagined MS Nursing would work:
The MS Nurse would be the central point of contact. They would have deep knowledge of the person’s diagnosis and current condition. They would be the person to contact other services – GP, Physiotherapy, Occupational Therapy, Social Services, District Nurses to name a few – and would furnish those services with not just a request for help but the ‘why’ along with other relevant information. The MS Nurse would be there to provide Support for the person with MS and to identify Support needs and refer as needed for other family members.
This is how MS Nursing in Leicester actually works:
“Let us know what happens”.
They cannot refer people. The political ‘why’ of that doesn’t matter. Well it does but for practical purposes it does not.
So it makes the MS Nurse role pointless.
Am I thinking the MS Nurse should do too much? No. I base what I think on my own nursing career (1985-2002) and my wife’s (1986-2003). What we expected is what really should be delivered but no, not happening.
The MS Nurse offered no practical help at all. Why? I really have no idea. Their next visit? November 2015.
Me? I have written off the MS Nurses totally.
There is no care for people with Multiple Sclerosis in Leicester / Leicestershire.
I made a complaint online about the MS care we are not getting.
I made this complaint at the University Hospitals of Leicester NHS Trust website as that is the place that employs these (alleged) MS Nurses.
I just got a phone call. That trust had said “Nothing to do with us” and passed it on to another NHS Trust in Leicester. I gave names and details to the lady who called and she said Yes, I had made the complaint in the right place and that the UHL Trust had got it wrong. She will pass it back and tell them that they need to deal with this.
Clueless. And in charge of the UHL Trust? This bunch. They must be so proud.
Chairman & Chief Executive
John Adler – Chief Executive John Adler
Karamjit Singh (Chairman) Karamjit Singh CBE
Non Executive Directors
Colonel (retired) Ian Crowe
Prof. David Wynford thomas
Martin Traynor OBE
Executive Board Directors
Dr Kevin Harris
Richard Mitchell – Chief Operating Officer
Rachel Overfield – Chief Nurse
Nigel Brunskill – Director of Research and Development
Kate Shields – Director of Strategy
– And just as I post this I get another call from the UHL saying the email sent to that other Trust was an error, it is being investigated and that this is all logged in the system. That a computer is involved is meant to make me feel better? …… ffs
The NHS in Leicester is crap. Must make John Adler and Karamjit Singh so very proud to be in charge of this pile of crap. (Still, one of them got a CBE for the bullshit the place must have spouted).
Multiple Sclerosis care in Leicestershire is atrocious.
The MS Nurses have done nothing to help in almost 14 years.
Have they ever done assessments to check the progress of the disease? No.
Have they ever offered any practical support to J? No.
Have they ever indicated places where I could get support? No.
Have they ever asked about side-effects or efficacy of the many meds J takes? No.
Have they acted as a coordinator for any care at all? No.
Have they ever contacted us even by phone to see how things are? No.
And now when J is about to lose the ability to walk at all we have no idea how to cope because the MS Nurses have done and said absolutely nothing. Zero.
I spent 1985-2002 as a nurse in the NHS. My wife spent about the same. We know what nursing is, we know what a nurse should do and we know the standards of care that should be delivered.
It is shameful.
I try not to comment on J’s MS but sometimes it needs to be written down so we both don’t forget, so there is a record.
Today is the first day that we had to use the wheelchair in the house.
Today is the first that that had there not been two of us (myself and my eldest) that J would not have been able to get out of bed or back to bed.
We have asked for support repeatedly and got none.
There is no NHS in Leicestershire.
We just have stress and tears.
I was upstairs as normal, Jacqui was downstairs as normal and D was watching a film on her laptop – she wears headphones for that. I see a UPS van pull up and knowing that D was downstairs I didn’t go straight downstairs for the package – I usually get down there quick to keep the dog quiet. I head down after a minute or so. I find a wet, dirty and shaky Jacq being helped back to the table by D. At some point – and despite me saying to leave the outside bins for me – J had stepped outside. Then she had fallen over and she cannot get back up. She can’t anyway even with rails or the right sized chairs. How long she was there we aren’t sure but thankfully the UPS delivery happened and he found her. She was understandably incredibly upset, crying and more, D felt guilty as she was downstairs. She’s okay now, there was no physical damage but the incident hurt in other ways. So tomorrow we head out to find some sort of pendant/bracelet which she will wear and a box that makes noise for me. Checked online but if you are disabled then items become ugly as hell, bigger than they need and several times as expensive. A wireless doorbell might even work. But as it is something she will now have to carry all the time it’s only fair she gets to choose which is the least ugly of the ugly bunch. The worst part of this? She did not disagree when I said we needed the pendant thing.
J’s MS is hard to track because just like a kitten becoming a cat the transition from ‘can do’ through to ‘not now’ is slow. Some markers are unavoidable though.
Finding it hard to get up the stairs lead to the downstairs toilet being put in. Then finding it impossible to climb the stairs on hands and knees just to go to bed lead to the stairlift.Â
Difficulty with the bath lead to a powered bath seat and in time being unable to use that has meant the bathroom being turned into a wet room.
Grab rails are appearing where there were none. The bedroom needs to change but we haven’t worked out how to do that yet. A ramp up to the side door is being put in and I think one out to the garden.
The car was used but driving is no longer an option. Â The powered wheelchair has been partially accepted and is being used.
Buying cutlery was determined by how it looked and felt but now the handles are scrutinised. Pens and pencils now have little padded tubes around the bottom part to make them wider and easier to hold.Â
Tablets used to be paracetamol for a headache, now it’s 20+ a day.Â Taken with other effects these are profound changes to our family life but as it creeps so quietly you just don’t notice until that moment of “Why do we need this?”.
On the plus side she’s getting to like her macbook.