We are battling to get a diagnosis and have had no support from
Anyone despite being 4 years in
My mum cannot mover her right side hand or leg effectively and has alien limbs and rigidity in her leg causing multiple falls and a fractured arm that required surgery a few months ago
She had slurred speech and difficulty swallowing and behavioural changes
She was unfortunate to see a neurologist locum 3 years ago who looked at the wrong patients scans and showed us 3 bulging discs in the neck and referred her for spinal surgery . We waited 2 years for this believing that was the issue
I was constantly phoning to say she was getting worse and trying to get help from the gp for physio etc but they couldn’t help as thought it would make it worse
When she finally saw the neuro surgeon 2 years on he straight away said her actual MRI didn’t show anything to suggest she needed surgery and that it was clearly neurological and she shouldn’t have been referred to him
This WASTED 2 precious years of not getting help in any way whilst the disorder progressed.
She has now seen a neurologist after I battled to get an emergency appointment and since had a nerve condition test and Meg as they thought it was motor neurone disease. This has now been ruled out and they think it could be cbd or psp although her symptoms suggest cbd.
Pls is still a possibility although rare
She is currently in hospital after having seven falls in a 24 hour period and it has been a battle as no one seems to understand or communicate in hospital. They seem focused on freeing up a bed and think putting a bed and commode in the living room is the answer to all our worries
We are all including my mum feeling like no one cares and everything is always a battle
The neurologist she saw back in December referred her for physio, speech and swallowing, OH but we still haven’t heard from them only the ones in the hospital currently
We have adapted her house ourselves with stair lift, rails everywhere, downstairs toilet and as she is getting worse that still isn’t enough. She lives alone and we go most evenings and weekends and do all her cleaning etc
Any help, advice support is greatly appreciated
They have discussed between themselves if she could go to a neuro rehab in the short term which I think may benefit her but are now saying she doesn’t meet the criteria as she has failed the cognition assessment - not really clear on what this means
Needing some advice on where we go from here
And trying to look at options, will she need 24 hour care or can she stay at home as she wants to with support and what might that look like, entail and who would sort that out? Would she qualify for Continuing health
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Karen1981
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Hi Karen 1981, I understand how stressful this must be for you. I'm not sure if I can help but here's a few thoughts. Could you follow up with the neurologist for a more definitive diagnosis and to get contact details for the OT, physio and SALT so you can contact them direct - sometimes chasing can help/ loudest voice and all that. These are all very useful supports fir your mum in providing equipment and supporting with symptom management and can get things done Also find out from neurologist about future appointments. They don't do a great deal after diagnosis but are very useful if you can get 6 monthly or annual appointments where you can discuss symptoms and they can advice on support and possible meducation to help with specific symptoms. Find out if you have any hospice or charity that support with life limiting / palliative care in mums area and see how they can help, again they are often a good link into other services. Talk to your GP again about how they can help now you gave a probable diagnosis- putting her on their palliative register, if needs home visits, symptom management eg not sleeping, pain, saliva, coughing, urine issues, link to bowel and bladder nurse, referral to eye hospiral uf needed, how district nurses can help etc If you haven't already, do call the pspa helpline and talk to them about your/ your mums situation. They can advise on many things you can do, what support services you need etc and as every area and region operate differently can often advice you more specifically what may be available in your area. They can also give you more info on benefits such as attendance allowance, pip, carers allowance etc and about social care ( means tested), and chc which is nhs funded care when a primary health care is proven (not just an illness diagnosis). It's also worth a good Google on all of these. Chc is complex and hard work to get but can be achieved with the right effort and evidence. Hooe this gives you a start Best Wishes Milli dog xx
I was thinking the OT would now sort out any extra care she would need but I will speak to the doctor and get them involved as she does need input from bowel nurses now.
The neurologist back at the start of December had requested a DATspect scan but the letter was only just typed up to request it as it’s in another area. I don’t get why if took 8 weeks !!!! And he referred us for SALT, OT and Physio but no one has contacted yet from the community but hoping now they are involved through her being in hospital it will continue
They were looking at her possibly going to a neuro rehabilitation but I believe they assessed her and she didn’t meet the cognitive criteria
Not sure what this means but I have said she would benefit going to this setting as so far she’s had nothing
Shouldn’t they assign us a case worker to halp advise and link all the above teams?
Thankyou for you reply again x I just can’t get my head around how people can be so ill and there is no urgency or it feels like they don’t care
If you have a stroke you will be referred to stroke specialists immediately which is great
If you have cancer you will have all tests and treatments started within 6 weeks which is great (I don’t wish either on anyone and do sympathise)
This is a terminal condition and it should be a battle at ever stage and not just added to long waiting lists with no urgency. I just can’t get my head around it and have lost all faith in the health care services
Sorry for the long rant
Any way, so on a positive I will contact the GP and try chase her scan appointment again as she will then get a follow up with the neurologist xxx
Do you know if there any medications that could slow it down if it is CBD or relieve some of her symptoms as I worry that if there is then she is already 4 years in and has had nothing which is really neglect
Hi Again, It woukd be great if there were case workers who provide a link and coordinate services but I'm afraid it doesn't work that way, there will though be many services who can help your mum and as they start to get involved you will find they do generally talk to each other....as im finding at the moment whilst my husband is in hospital they dont always talk to you...you have to push. So it will be a battle and I'm afraid to get anything done it's a battle you will need to take on and you will have to be the link/ coordinator. I call it getting my bossy cow head on, i wear thus daily these days 😁.... be pushy, don't wait for specific health professionals to get involved contact them directly....the more you push, ask, be assertive, have a strop, challenge etc in my experience the more attention and support you get. You mention focused treatment - with such as strokes, cancer there is a short window for action and treatment hence the speedy and coordinated response in those situatiins. Sadly with psp/ cbd they are rare so little known even in the medical community so few neurologists with the expertise and often fewer health professionals with knowledge of targeted support needed, (often we are the ones guiding them) and currently there are no cures so there isn't anything specific to slow down the illness but there are many things to ease or help with symptoms that may as a result slow certain symptoms somewhat. Eg keeping active and mobile even with assistance, using a neuro walker may build or retain some strength and may help prevent as many falls, engaging in interesting activities may help with communication and cognition, a good diet can help etc.
Also important - Different people have different symptoms - some may try Parkinsons meds for tremors (often discussed and agreed with neurologist) at early stage, others take meds for saliva or to ease coughing, anti depressants for mood, tablets to aid sleep or for pain, prism lenses to aid with double vision, botox to help with involuntary eye closure. These are just some of the symptoms as an example my husband has medication for, other people may have very different symptoms and take other meds....that's what's quite important with psp and cbd everyone journey is different, symptoms can different and occur at different times.
Some support isn't medication but interventions to help eg wearing dark glasses or eye patch for eye issues, hand grips for curled hand, massage, participating in neuro physio exercises, attending group activities to ensure engagement and stimulation, ( these may be via a hospice or local community activities or even 121 with a carer such as a jigsaw. They nay be very dufferent from what the person ysed to be abke to do but can be interesting and supportive nontheless) voice banking, finding products on Amazon such as adapted cutlery as dexterity wanes etc. As illnesses with no cure its all about finding ways to help make life more comfortable, easier, pain free, interesting and as normal as it can be.
You mention in your posts that hospital and health professionals aren't speaking with you. Insist that you are your mums carer and that they must speak to you at every turn. Having POA will help with this but also will registering yourself as her carer at her GP surgery as that info will filter through to those involved in her care. Something I did that has proved to help....i created a small booklet with basic info @ my husband name etc, my contact details and the fact I was to be involved in his care and brief notes about his key symptoms eg the fact he could hear and understand everything but would be slow to respond, have difficultly finding words and spoke quietly. I included one liners about all key aspects, sight, mobility, eating/ drinking, toilet, swallow, etc and a little about him and his interests from what he liked to eat to his current and past interests. This goes with him to hospital and I talk to everyone I meet in hospital to ensure they know ge has osp and they've read it and I have found it invaluable in educating those providing his care and has certainly improved their attitude to how they treat him.
Ive rambled on but I would say again please do call the PSPA helpline first thing on Monday they are open 9-9 weekdays they can give you lots more advice, answer specific questions and will be able to explain better than on here all about social services support v chc. Take care xx
We gave up on the GP ages ago but they may take more interest since she saw the Neurologist as I hope he would have written to them
She is now being seen by the OT and physio in hospital but they don’t involve us at all. I ask for them to contact me to update me but the call I got was from the OT who started asking if a bed and commode will fit in room !!!
Just felt like there obsessed with beds and don’t understand what she might need so doing a discharge plan as if for a routine patient
We’re just submitting forms for power of atourny for both health and finance
How did you get social services involved please and how can they help and did you have a CHC assessment done at any point?
Sorry to hear about your Dad xxxx and thanks again for replying x
I’m my mums only next of kin and so everything is on me and I worry I’m not doing the right thing sometimes so it’s good to get advice from others going through the same xx
thanks for the detailed response … it’s really really tough and nothing has been easy.
Correct me if I’m wrong, your mum hasn’t had a diagnosis?
Being honest, the GP was useless but I suppose I emphasise as they have hundreds of patients. We only realised after a lot of calls that dad didn’t have a palliative diagnosis - once he had this more services unlocked.
I only mention the GP as they are the central point for referrals … to initiate process.
We have had to force our involvement on many occasions …
I cannot fault our local hospice, queens court … incredible.
I will defer to other amazing people on this forum, that diagnosis is critical.
it’s horrible to hear of your experience so far but it sounds so familiar unfortunately. It took years for my mums diagnosis after years of mis diagnosis. To get it we had to go private to a clinic in London. Not cheap but my dad will still say the best money he spent. When diagnosis happened it then took months to get the support needed from the various health professionals. This is when it became apparent the system is broken, they don’t connect the dots and work efficiently together. It took weeks/months of chasing and cry’s for help. Our experience is that the GP was not of any significant support but very important to have in the background. In desperation after going round and round in circles I spoke to a hospice and they were fundamental in helping us get on the support ladder. We are very fortunate that my mum’s neurologist has a special interest in CBD/PSP - it’s luck based on where mum and dad live. It’s the neurologist who reviews mum every 6 months and assesses meds based on progress and symptoms. My advice is to get a hospice relationship going and hound adult social services, I was on the phone to them almost daily. I am thinking of you and your mum as it is a tough journey but keep strong, the support and help is there once the dots connect.
I hate to say this, but the system will just diagnose your Mum (after a time) then leave you to it. Unless you fight for everything.
Where about in the country are you? It might help people target advice.
We got a private diagnosis first, then a nhs as it took two years for a neurological appointment. But they knew straight away what it was, Mum has PSP and CBD.
From there my first conversation was with the PSP association who told me what referrals we needed and I contacted my GP asked for them all to be made. But none of that could be done without a diagnosis.
In terms of care, you can have an assessment at your local council, the first question will be does your Mum have savings above £23,500 - if yes then you will be low priority to them - we never got a full assessment (partly because mums diagnosis was clearly not social care related as she was in her 60s when diagnosed). If you say no, they do run a financial assessment and look into if money as part of the assessment.
Local hospices can be great, but again they will, want a diagnosis. But can support on benefits, CHC, etc.
I am sure you have read the PSP Association website and understand this illness is incurable, in the last 2.5 years of knowing it and Mum, none of the medication or physio has helped her as when diagnosed she was estimated at 5 years in. I managed to keep her at home until 6 months ago, she’s now in a nursing home, still fighting but her swallow is going, her communication is worse, regular UTI, her left side of her body is twisted and doesn’t work with her phantom leg too and many other things.
Can you get a second opinion from a neurologist? You really need a diagnosis as this will mean doors can be knocked on and maybe opened if available in your area. Most neurologists are aware of PSP and CBD these days I believe, but may not be expert in them. Have you asked the Neurologist if it’s CBD or PSP or both, sometimes then you get a formal response.
In terms of where she lives, whilst you can have 24 hour care at home, if you can find a good nursing home it is probably a better arrangement, took me 3 years to realise I had to do it with Mum. Home care as they call it, would be a range of randoms generally and it never got consistent which meant I was filling the gaps, fighting battles all the time and driving to her many times a day whilst working full time. Mum would rather be in her flat but understands she needs someone 24/7 a day but doesn’t want someone sat there just waiting for something to happen.
The main thing for right now, the hospital can’t discharged your mum without appropriate care in place, they may suggest a care home - you can vet these and refuse the ones that are not acceptable to you. If she needs 24/7 care they will highly likely refuse to put it in place at her home (it is more expensive for them) hospitals generally pay for care if someone needs it for the discharge plan, but long term it would depend on who picks the bill up, if it’s your Mum, then you will have to sort the care out (or whoever has POA for health and wealth).
It’s a tough battle and in my experience the only way you get stuff, is having to fight for it all. Good luck.
thankyou and I’m so sorry to hear you’ve all had the same struggle. Sounds like you have done a brilliant job between you and your mum is in good hands xx
I have now contacted our local hospice so will hear back from them soon
I will keep fighting for my mum too x
The hospital did initially say she could go to a neuro rehabilitation ward but we get a different story every day. I’m hoping to have a meeting with them this week as they were asking about her home and kept just asking if a bed and commode would fit in the living room and I said it is not safe to discharge her as she and her home is so we will see what happens
Thankyou for the advice x I’ll also contact the GP just so there in the loop and look at social services after the meeting we hopefully have this week x
Good luck and best wishes to you and your family xxxx
Hi Karen1981, great advice to follow here. Being in the UK, I would also suggest you ring the PSPA Helpline (pspassociation.org.uk) and talk with someone who understands (I found benefit when looking after my wife with PSP). There is a PSPA Care Navigator for your area you can ask to speak to. They may be unable to help totally with out a definitive diagnosis for PSP/CBD. However it does help to talk. NHS Continuing Health Care (CHC) is one avenue the PSPA can advise on, plus other benefits. All my very best wishes at this difficult time 🙏
I suggest you obtain a copy, or a few copies, of the PSPA’s GP Guide and shove it in front of the noses of every healthcare professional you come into contact with and make them read it. I have PSP and my doctor diagnosed old age! I was fortunate that a couple of years later I had an OT who suggested to the GP that I be referred to a neurologist. Initially my GP refused but the OT persevered and I obtained the referral. Later I obtained the GP Guide and my GP then quite literally held her hands up and stated she’d never heard of the condition! May I also say your mother is quite fortunate in that you’re very understanding. Unfortunately my husband originally thought I just wasn’t trying hard enough physically, but as soon as I received my diagnosis he was and is very understanding.
Hi Karen1981, if you go on the PSPA website and look at the information abd resources section you will find lots of great info that you can read, get ideas from; theyll give you a more in deoth understanding of symptoms, tooks and techniques and services ti help and you can print off to give to the various health and medical professionals. There is also useful info about such as benefits, links to organisations, information @ chc and so much more
Hi Karen, so sorry that your has got horrible disease.
My wife had PLS we first went to the hospital when we noticed it when she could not pull the duvet up on the bed left hand she just had no strength in it. That was in April 2001. They don’t ever test MRI, Lumber punch , DAT scan, CT scans for about one year and still didn’t know. So went private it cost about £300 and straight away he said what it was. Because he was not directly with the NHS, he was private. He could only send a referral to the GP. Most of the GP’S do not know about this disease. It’s a very rare disease and they are only general practice doctors but they will refer you to see a neurologist and that’s when things start happening. They didn’t get a team together of about seven people they include social worker, OT. Speech therapist, physio and Palliative Care. Once you get Palliative Care, everything else will fall into place they will sort it all out for you. My wife had carers coming in four times a day at no cost to me whatsoever regardless of how much money I have. You are entitled to a lot of things which are free to you, which obviously you do not know about. Wheelchairs commodes hospital bed if staying at home, handrails in the house.
Thankyou x I will keep fighting to get her the care she deserves and needs x sadly it seems they delay diagnosis maybe for cost purposes. The neurologist she saw in December did know a lot about PLS and said it would rather be a parkinism like CBD or PSP but said there rare. He ruled out PLS but she has every symptom and when I questioned this as the nerve tests only rule out ALS he said it’s that rare he’s only seen 2 cases since 2007 so it would be likely not to be that. In any case I will keep at it until we get a diagnosis and some proper help. He did refer her for a Dat scan which I’ll keep chasing and did refer her for OT, Physio and speech and swallowing which is good but we are just on waiting lists apart from the ones she had seen in hospital who are no use and just trying to get her home to free a bed up. She was really down tonight and upset she soiled the bed. I just feel so sad for her but try keep her spirits up. She doesn’t really know the extent of the diagnosis and I don’t want to go into it too much until we’re sure xxxx
Sorry to go on my head is just full at the moment x
Everyone can understand where you’re at here … it’s overwhelming yet you have to fight, be a pain in their ass to drive the system. Contrary to how you feel like just hugging your loved ones 🙏
Thankyou for sharing and sorry to hear about everyone’s struggles x
I have been given some really good advice on here and don’t feel so alone x
I have contacted the hospice and arranged a meeting with the physio in hospital tomorrow x
The hospice have been really helpful already but can’t do anything whilst she’s in hospital but said as soon as she is being discharged to call them and they will support with everything which is very reassuring
I can only endorse everything that has been said already. In addition -
Via the neurologist, once CBD was diagnosed, we had had input from neuro physiotherapist which was very useful
We also see a Parkinson’s specialist nurse - again via neurology (he’s under the Walton centre in Liverpool) - and can access her for advice as needed - she is great for practical advice and advocating on my husband’s behalf
We obtained a specialist wheelchair from the NHS wheelchair service which is very supportive and adjustable so helps keeping him comfortable during the day and when we’re out and about
It was during his last stay in hospital that he was given a positive CHC assessment - I think they speeded it up to facilitate getting a good enough care package and getting him discharged home - might be worth asking the hospital discharge team or PALS
He’s had a couple of spells in nursing home for respite for me - they didn’t know how to look after him properly and he hated it. It has been agreed with Palliative care that he will be cared for at home to the end of his life if at all possible (obviously can’t be guaranteed)
We had a meeting with the OT who tried spinning us what she thought was a good discharge plan but when we questioned it she couldn’t answer
It’s basically a routine discharge plan with a six week home assessment
I asked if she had been assessed by anyone with neurology knowledge whilst in hospital and she said I don’t know
I asked if a CHC assessment had been started and she looked at me blankly
We have said we’re not happy at all and it’s not good enough and that she needs a proper diagnosis and the correct package in place that suits her individual needs based on neurological assessments, not just a routine discharge plan based on personal care needs only. I said she needs input from bowel nurses, speech and swallowing, a case worker, as well as neuro trained IT, Physio and palliative care , not just a plan to assess her personal care. I’m so angry and apologise for the rant it absolutely is not at you xxxxx
I’m glad you got the help needed , it sounds like they ca re and did see the benefits of doing the right assessments x
Thank you again it is so appreciated
I’ll post once we get an update x x hopefully it will be better news xx
Sounds like you have taken the right approach and are able to be assertive which I find is essential. My husband was in hospital for six weeks and they really had no idea about his condition nor how to care for him. I spent many hours each day at the hospital with him - ensuring I spoke to staff on both shifts to tell them what he needed; doing his physio exercises; alerting them when he needed changing etc. I think they realised that I was a force to be reckoned with and it sounds to me that you are the same. Good luck
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