Honestly I don’t know how my mum copes, she in horrendous pain due to ms and the way her last carers left her with permanent damage to he legs because they just put her in bed with her legs bent. After a few years of that neglect and she has permanent damage and pain that never seems to ease up.
The GP is utterly useless, my mum is 100% bed bound and can’t be got out of the bed. The ots say she can’t be hoisted into her chairs (shower, wheel, or her sitting out chair).
I had the pain clinic call and all I said was I’m not sure how we’d get her there as she’s bed bound and can’t be put in her wheelchair. She then goes “well shall I cancel the whole lot and send back to GP as we can’t do anything unless you go the hospital physically”. It was her tone she was so rude and didn’t give a F.
I really don’t know what to do for her now, she’s in severe pain when her painkillers run out, to the point she’ll wake me up absolutely screaming her head off in pain. I spoke to the emergency GP and got a telling off about how it’s for urgent things only, this isn’t urgent as it’s ongoing. Seriously, you honestly think that living the way my mum does is any good for her or her mental health? They’re disgusting and it’s absolutely impossible to get her to a pain clinic for review.
She can’t see the specialists, needs Botox injections in her arms and legs due to spasticity or even have the pain relief. No one can come out and advise on what we can do bar her GP whom is absolutely useless on this front. My mum has no quality of life at all, and all she does is sit in bed listening to the tv as her MS has caused vision issue (to be honest I don’t think she can see at all but says she can, she’s like that). On top she also had dementia and epilepsy which are both just getting worse and worse, after a seizure it takes her a couple days to recover fully.
But how are we meant to get her to the hospital? She has an extremely important appointment next month and I can’t figure a way we can get her there, transport to bring her home also required an emergency car to get her from the stretcher to chair. I just don’t know how I can arrange all of that and fear if I call the patient transport then they’ll just send the regular stretcher which won’t go through the front door and don’t think I’ll be listened to when I call and say look she need this, this and this to get to and from and imagine it will be a nightmare to sort and she’ll miss her appointment. I’m at my whits end, if her old carers looked after her better and didn’t allow her legs to become some bent that when she’s lying in bed her ankles touch her bum and any attempt to manipulate them to a normal position results it her screaming in agony with the pain she’s got. I hate seeing it and want her to get the care but how can she when transport are rubbish and they’re are no other options, she’s got multiple conditions that are severe yet nothing can be done about any of them. It’s beyond disgusting and ridiculous.
Hugs. I know how you feel. Going private might be a option. You are in my prayers too.
Sending lots of hugs too, my husband is bed bound in hospital at the moment and his future looks pretty bleak so I have the upmost sympathy for you
Thank you, private isn’t an option at all. She doesn’t get that much benefits wise and because I’ve been unable to get a job due to having to watch them was just horrible, now i can finally try to find another job asap but been outta work 5 years and did my degree and masters in between looking after mum. But yeah she helps me out a lot financially as I haven’t been able to work because of it and yeah just a nightmare to be honest.
I mean how hard can it be to get a small woman to hospital is beyond me, it really is beyond me how crap like this can happen in the first place. I’m writing to my MP, it’s deeply discriminatory towards those that are physically unable to even hold a cup is ridiculous imo.
How do you get him to and from the hospital for regular appointments? I really can’t figure out a way and neither can the patient transport people because. “They aren’t trained on moving and handling”, does it not seem stupid that people dealing with disabled people on a daily basis aren’t trained for moving and handing is beyond me. I hope your husband get better and out soon, I’ve found with mum once she’s in its ages for them to get her home.
Hi, previously we used the Hospital transportation service but last month he was admitted by ambulance for hernia issue and since the operation for this his mobility has gone downhill no and he’s been bed bound in hospital for the last 4 weeks. They’ve said if he comes home now he would be bed bound with carers so he’s stuck in hospital awaiting a place at a rehab centre where he can have more intensive physio to regain some mobility.
It is crazy that hospital transportation staff aren’t trained on moving and handling patients, you would have thought it would come with the job!
Do you have an OT who can give you any advice?
If you can do so, feel free to ask the hospital for advice. Many hospitals have a patient transport scheme in place in order to start with. Investigate further. Alternatively see if you can use a local community transport provider instead. Dial A Ride is a fairly good one. Research online.
Thara, please read the posts properly and think carefully before writing anything further!!!
Jamie, does mum receive NHS Continuing Healthcare? She is clearly in a dreadful situation and the response from those you have appealed to for help and support have badly let you down. My mum was also in a bad situation, but yours is so much worse. Have you asked the MS Society how you can get round this at all? You can’t be the only carer in this position, mum should never be in so much pain that she is screaming. Have you ever thought about recording her suffering on your mobile phone and sending it to those who are ignoring both of you? Your MP? I know that this has worked to make people finally sit up and take note when all else has failed.
sending huge empathy - I hear you, it’s inhumane and unconscionable that there is no support for your Mum.
the only thought I had was, if you haven’t already, to contact the local hospices or see if there is hospice at home support. Pls don’t get me wrong, I’m not saying she should be there, but in our area the local hospice has a local bus service they organise for disabled/infirm people of all ages to either spend a little time at the hospice for carers to get respite or (I may be wrong on this) but also for hospital appointments. They won’t be trained specialist nurses, BUT they could be healthcare assistants who have been trained…We didn’t use them but I’ve seen the bus around our area and the city.
I was wondering if they could also offer you some ‘respite’ time so you could pursue some work as you were saying you’d like to try and do some, and see how you can leverage that amazing feat of a degree and masters that you achieved whilst looking after your Mum!! BIG kudos!
FYI when I looked into ‘hospice support at home’, for relatives in London the one in their borough had integrated coordination between GP practice and, more importantly, community nurses and a hospital consultant!!! (mind was blown by how things are SO differently resourced & coordinated in London - altho it’s still a postcode lottery!)
Hope those thoughts help…if you feel comfortable sharing your location perhaps someone in the forum has more location-specific ideas…
goodness, your poor Mum. It most be so hard seeing her like that and knowing what caused it.
I agree with Victoria, contacting the local hospice could be an avenue of support. They are used to sorting out pain medication for people, keeping them as comfortable as possible and ensuring the best quality of life possible.
As BB said, does she have Continuing Health care funding?
I agree too that MPs can make things happen as everyone in officialdom jumps to attention when they start firing off letters.
Regarding her hospital appointment, in an ideal world what needs to be in place to get her there?
If this could be worked out then she could have the same arrangements to get her to have the botox injections too.
The MS society have a helpline and forum too that might be able to advise
Scope may also be able to advice re the transport issue too as they will have experience of people with severe contractures such as you poor Mum has with her legs.
I very much doubt that if King Charles was unable to get to hospital for any reason that the NHS would say “go to your GP.” The fact of the matter is that the NHS has a duty of care, and if the decision has been made that your mum needs help from the pain clinic, and is unable to jump through their hoops, they have a duty to find a way. NHS services are funded and controlled via Integrated Care Boards. You might try contacting yours - you can find details here: Find your local integrated care board (ICB) - NHS (www.nhs.uk)
Explain your problem - that Mum can’t access transport of any kind but the Pain Clinic only offers hospital appointments and refused any help. Keep it brief and stick to just that point, because it’s the one thing they can deal with at this point and it’s the most important one. Be clear that you’re looking to get your Mum the help she needs. One option might be for them to arrange hospice support, but the same issue is there - she can’t get there. So someone has to come to her to start the process.
Our local hospice has brilliant services for anyone with a life limiting illness. Dad had prostate cancer, only admitted at the very end, but regular checks and medication adjustments done as needed.
My husband is in a similar position with his MS. After being in hospital for a month last year, he lost his mobility. Despite OTs working hard they couldn’t get him to stand because of severe muscle spasms.
I don’t know if you have access to a MS nurse, but ours has been wonderful. She enabled a doctor to come from Addenbrooks to do Botox in his legs (at home) and also did a referral to UCH London. He is now under the neuroligist there who contact us via video calls.They are trying different medications for the spasms but nothing is working yet and the spasticity is worsening.
So it may be worth enquiring with your GP if there is a MS nurse that could visit your mum.