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If anyone can help - Cardiff area

foxukfoxuk Member Posts: 107 Pioneering
My wife is being held against her will in the University Hospital of Wales.

We need an ambulance with trained paramedics prepared to do a four person sheet lift on to my wife's wheelchair and bring her home - probably a lift into bed would be more comfortable for her than the hoist as well.

I have contacted all the ambulance services that I can think of and they all rely on the NHS for their bread and butter - availability disappears when it could mean losing their money from the NHS

Below I have copied the contact form I sent to Julie Morgan MS who is also our constituency MS.

Any help you can give please do - I have already contacted the Wales Ambulance service complaints which used to be PALS which no l;onger exists in Wales.

She is a disabled person who has been bedbound since her release from hospital last November. We were told that we should not do other than turn her every 4 hours day and night until the physiotherapists had attended our home to give advice. 

Despite chasing by both ourselves and our GP only one physio has ever contacted us by phone and as soon as he heard her disability was Transverse Myelitis he would not come out and said she needed a neurological physiotherapy team. 

 The reason no given is covid but she was released at the start of last November and the first lockdown did not start until March.

When she was in hospital 14 months ago she was left in bed for 26 days without being moved to a chair. Because of this her abilities deteriorated badly whilst in hospital.

We were told that a move to a chair should not be attempted until we had advice from physiotherapists to loosen her stiff legs. I did not want to harm my wife so continued the care we were advised to perform waiting for help.

I was trained by the nurses to pack and care for her pressure sore. My ability to do this and the nurse checking my ability to bathe, turn and care for her sore said that in India the highest mark was a distinction and that is what she would grade my ability as.

There was a problem with why the pressure sore had happened until Prof. Dyan stepped in and stated that as it was the first pressure sore that she had in the number of years she had been disabled with her level of immobility that my care over that time must have been 'exemplary'.

Around four weeks ago my wife developed a high temperature 'of unknown origin' and had to be taken to hospital. This turned out to be an urinary tract infection and was treated in 5 days. This was the first UTI she had had in 17 years of being catheterized. For catheterized people these are common. I hope our level of competence is demonstrated by this.

My wife came home and three hours later we had a phone call from a nurse saying she had been exposed to covid while on the ward. I could not get a test when she developed symptoms because they are rationed and we had been told to get one to check when she was developing her UTI. It was only by using the telephone and dealing with a person who had to get a code to override the computer system that I eventually had one sent out. It arrived on the day she was re-admitted to hospital.

I had also taken a test and we both had covid at this time. It was my worst day with the virus and Chrys was delirious. 

I am not going to mislead anyone. At the time they collected Chrys our room was full and there were problems. These have now been attended to and there is a 2.7meter by 2,7meter area around her bed which is clear of everything except for the hoist. I have had unmanaged diabetes for at least two years (diagnosed about 13 months ago and also problems with hypertension. I am now under 12 stone having lost 5 stone in the past four years. This has affected my ability to cope and caused the clutter in this room.
We are now told that a paramedic was injured getting Chrysi out. Neither of us saw any evidence of this at the time but we were both very ill.

The ambulance service are refusing to bring Chrysi home. Our access has been assessed and although the assessor raised no problems when he was here by the time paperwork was raised they have a problem which they have not even told us what it is.
We arranged with the ward doctors and nurses to get a wheelchair taxi to bring Chrys home. The main problem was that we do not have a bariatric wheelchair. The nurse arranging this managed to get one on loan so she could get home.

Everything was planned for her release on Saturday.

On Friday evening a senior nurse contacted me by phone and although she said she was checking the release said that with all the negatives she was not going to authorize my wife's coming home and that now the access and facilities would have to be checked with an OT. I would have to be checked on how I could use a hoist as I had had no training from them.

My problems with this discussion were.

1 She asked how I was going to get my wife into a taxi without a hoist. She said that the taxi drivers were not allowed to assist. - Both these assumptions are wrong. I had to explain to her what a wheelchair taxi was. The drivers are trained to assist and have been for many years.
She had concerns raised on paperwork by medical professionals and only my wife and my statements that things were safe. She refused to accept anything we said.

2. She had already made her decision and over-ruled the staff who had arranged the release.

3. My abilities had been assessed by people who have never even met me. Apart from being disabled they have no idea what I can and cannot do.

4 She said that she had been told that our hoist had been left in the garden. She refused to accept that It had been put there (probably) by the paramedics to clear access and having covid I had been unable to get it in until questioned about it. My concern was when I had been asked that it had got wet and had not been used for 14 months as my wife had been bedbound. I had dried it and checked it. It is fully charged and has held charge for 4 or 5 days.

5 Her attitude was dictatorial and one of the patients on my wife's ward who I believe is known to Julie Morgan as a reputable person offered to confirm this (she has since referred to the nurse as deliberately stripping my wife of all dignity). The nurse would not provide any details of what the problems were - and obviously we have no means of facing out accusers.

6 When I said that my wife would be able to sign herself out. This was answered with that would only apply IF she could walk out. 

I am sure that they will state a different story when or if you check. I was involved in this sort of thing when involved in the disability movement and it seems to be a clear case of 'educating the client'

Comparing the UHW care of my wife with my own.

It takes two or three nurses to turn my wife in bed and she finds this agonizing. I do this alone as trained by the nurses on her ward 14 months ago without problems and pain.

She has had one pressure sore in the 17 years I have provided care. She had one in her first five day stay and I cured this in two days when she came home and she now has another. The care is not catering to her individual needs.

My wife was a victim of surgical experimentation and abuse in hospital as a child. Being there is in itself terrifying for her. Being trapped there against her will is destroying her. I have fears for her mental health.

All we want is to be together in a home (we live in one room) filled with love.

The Medical Professionals saved my wife's life. The care of her covid has been wonderful. We are both vulnerable and we did not think either of us would survive.

I understand the problem faced by the senior nurse but her knowledge of disability was non-existent. She did not even know what a wheelchair access taxi was. She asked how I would get my wife out of the wheelchair and into the taxi without a hoist

We know we do not fit in their world and are tired of fighting we keep to ourselves and are happy together. This seems to now be being seen as wrong.

I am so mentally tired, as soon as I satisfy one thing they change the goalposts now having answered them all I am told it is all the concerns that have been raised and now my competence is being questioned.

I started caring for my disabled father when I was a child and he lived until he was 84 with Freidrick's Attaxia (it appears on his death certificate). He had been given a life expectancy of less than 40. I cared for my mother with dementia and mental health problems. At one time I was caring for all three and disabled myself. Apart from the recurrent dislocations of my knees and patellae al my permanent and numerous injuries have been caused by care provision, I have many years of experience of Caring and personal experience of disability but this counts for nothing.

If you can please help,

I do not know what to do or what to expect next.

One of the paramedics is supposed to have injured themselves on the last removal. IF this is so I am not really surprised The younger male was showing off to two female paramedics.

Replies

  • OxonladyOxonlady Member Posts: 408 Pioneering
    Hi @foxuk, I'm really sorry to hear of the predicament that you and your wife find yourselves in.

    You could make enquiries with St John's Ambulance but they will charge you a fee if they agree to transport your wife.

    I sincerely hope that you'll find some people willing to help you. Wishing you all the best 
  • lisathomas50lisathomas50 Posts: 4,348 Disability Gamechanger
    I know it may not be what you want to hear but it may be better for the assessment to take place so that any help or equipment that is needed can be put in place to make things easier and safer 

    I was a carer in the community and that's what normaly happens until the assessment  has been carried out people stay in hospital I live in Wales  it may not seem like it but they are doing what is best for you and your wife 

    I know you say taxi drivers help you you to get your wife in but the hospital is right thry shouldn't be brcsuse of health and safety 

    To use a hoist you have to be fully trained again health and safety could cause injury to your wife or yourself 

    They are trying to make things better for you and your wife maybe ask them to explain things to you so its easier to understand 

    You have also said you have a health problem I know accepting help and people looking into your life is hard and I understand that but people do need help now and again and you might find it makes things better for you and your wife 😊  
  • foxukfoxuk Member Posts: 107 Pioneering
    Oxonlady said:
    You could make enquiries with St John's Ambulance but they will charge you a fee if they agree to transport your wife.
    St johns are unfortunately one of the problems. All the ambulance services have supply problems and being honest about having a problem which is only fair makes availability dry up.
  • Ross_ScopeRoss_Scope Posts: 4,151

    Scope community team

    edited March 20
    Hello @foxuk

    I'm sorry to read the situation you've been put in, it sounds really difficult. 

    It might just require continued dialogue with the hospital to make it clear exactly what they want you to do to then let your wife home. I appreciate it has been mentally challenging though having this back and forth with them, when you just want to be back together under the same roof. 

    Alternatively, if you believe you have done everything they have asked of you, you may wish to consider seeking legal advice for your situation. 

    You mentioned:

    "My wife was a victim of surgical experimentation and abuse in hospital as a child. Being there is in itself terrifying for her. Being trapped there against her will is destroying her. I have fears for her mental health."

    This sounds very concerning, were these things reported and dealt with at the time?
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  • foxukfoxuk Member Posts: 107 Pioneering
    lisathomas50 


     I have provided care for my wife for the 20 years we have been together. I have given clear comparisons of the levels of competence when dealing with a very rare condition

     My wife's neurologist warned us a couple of years ago that the worst thing that happens to TM people is that they come across a 'professional' who has dealt with TM previously as they are all different

    The only care provision on offer is 'intimate care' Bathing cleaning around her catheter and emptying her catheter bag. These are jobs that I can do and would be totally against my wife's religious beliefs to have a stranger perform in a non emergency situation.

    If you were a Carer you know the incidence of UTIs with catheterized people - my incidence is one in 17 years. My wife has had one pressure sore (which now a specialist nurse has said was probably caused by movement not pressure) in the whole time I have provided care. It took less than five days for the first one and a couple of weeks for the second in hospital.

    At the time we bought our second hoist 14 months ago - we had the first one for over 10 years. I was given a leaflet by an ot at the hospital about training - there were two courses in the previous year nothing then or in the future. As I have been using hoists without one problem for many years.......

    My wife became disabled in the USA and was taught different ways to cope - things there are now a lot different and now they expect her at 63 years old to change all the patterns she has built up over the years and this is safe?

    Thank you for your concern but I think this is more a case of discrimination than any idea of care.
  • foxukfoxuk Member Posts: 107 Pioneering
    foxuk said:
    Oxonlady said:
    You could make enquiries with St John's Ambulance but they will charge you a fee if they agree to transport your wife.
    St johns are unfortunately one of the problems. All the ambulance services have supply problems and being honest about having a problem which is only fair makes availability dry up.
    I have offered nurses £500 to accompany my wife but they have jobs to worry about. I would willingly pay £1000 cash for a four person lift to chair - transport home and a move into her bed - That's cash for qualified  people - folding money. NB we are on benefits but my wife is not doing well and I fear for her sanity
  • lisathomas50lisathomas50 Posts: 4,348 Disability Gamechanger
    @foxuk maybe speak to your own doctor about the situation I don't think any will remove your wife if the hospital are saying your wife can't be discharged at the moment 

    See if they can get the assessment done quicker or maybe get legal advice the first hour is free or speak to citizens advice 
  • foxukfoxuk Member Posts: 107 Pioneering


    "My wife was a victim of surgical experimentation and abuse in hospital as a child. Being there is in itself terrifying for her. Being trapped there against her will is destroying her. I have fears for her mental health."

    This sounds very concerning, were these things reported and dealt with at the time?
    No my wife is 63 and her mother was a single parent. It was a charity hospital in the USA and her mother was doing everything she could to help her daughter. She was completely taken in by the infamous Dr. Reynolds and it was not until my wife saw a specialist many years later that she was told of Reynold's reputation. By then Reynolds was dead and the records have gone.

    It's one of those things that just needs to be left alone
  • Sandy_123Sandy_123 Member Posts: 1,538 Pioneering
    Hi @foxuk sorry to read about your wife and your situation, contact PALS in your hospital link below
    https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/
    Do you both have a social worker? Might help with things. 
    You might benefit from having carers at home also. 
  • mikehughescqmikehughescq Member Posts: 6,620 Disability Gamechanger
    Forgive my wariness here but I’m not sure this is an appropriate request for any forum and the voice we’re not hearing here is the person in hospital. Hospitals clearly have no interest in bed-blocking given the financial penalties and even more so during a pandemic when all beds are at a premium. Discharging a person who needs a boost into what is being described as one room also raises serious questions.

    There is a clear process to be adhered to here. Before discharge there must be a multi-disciplinary meeting. That’s often more breached than adhered to but it’s an issue which can be forced and there’s no shortage of community care solicitors willing to be involved in such things. 

    This sounds like a sad scenario for all concerned but it strikes me that there’s obviously only one side of this specific story being given and which can be given here. Regrettably we’re unlikely to hear the patient or hospital perspective and for that reason I’m afraid I’ll be standing well clear.
  • lisathomas50lisathomas50 Posts: 4,348 Disability Gamechanger
    Mike I agree 
  • foxukfoxuk Member Posts: 107 Pioneering
    I have been a member of this forum for some time.
    I am a disabled person asking for information and/or help - which can be checked from my previous posts.
    The disability movement has fought for us to have the same rights as non-disabled people since it started.
    The right to make our own decisions about our own lives and what we wish to do without control is at the core of my own beliefs as a disabled person
    We have been judged without assessment and even when assessed on the basis of the ideas of non-disabled people about how we should become as near as possible them.
    One clear example is that my wife was judged on her ability to transfer unaided from a bed to a wheelchair. She does this sideways as she was taught in the USA she has a profiling bed which supports her back. She was expected to sit on the side of the bed and then transfer unaided - this failed because she needs assistance and needs back support.
    My own impairments have been of no interest to anyone (except perhaps my GP) as long as I was able to continue. Now they judge me on the basis of third hand interpretations of my wife's worries about me hurting myself. Even IF that was happening it would be my choice to make and not theirs to take away my freedom.
    This is a very simple matter of disabled people being allowed to make choices about how we live our own lives.
    Just to give a comparison. Rugby is a dangerous sport. I became a disabled person in a compulsory school games lesson over 50 years ago. Applying a duty of care in the same way as you seem to for non-disabled people Rugby and all contact sports would be banned.
    My contention is that we have lived this way for two decades. The only 'help I have been offered by the care providers is bathing, catheter care nd emptying my wife's urine collection bag. I await contact for a carer's assessment which I asked for when offered five weeks ago.
    I wish life was as simple and sensible as you wish it to be. I am 66 and have been a charity trustee, member of the board of directors for a CLG, member of an access team and helped set up a Carer's forum. In addition to personally aiding others.  Most were in the disability/Care field. 
    My wife is the ex-president of an American public sector union.
    20 years ago we married and the Care of my parents took over from outside activities as they passed my wife and I got older and our impairments increased. There was no return to helping others possible.
    After 20 years most of the people I knew are dead or have moved on. 
    It may surprise you but amongst the first things one is taught as a volunteer for the CAB is not to judge the people asking for help. Yes there is only one side to the story to see and there could be obvious holes in it. BUT when asked for help it is help that is given and the free will of the person asking is respected.
    This is obviously a situation where we will have to try to exercise our right to free will without help.
    How far have we gone backwards in 20 years, what happened to our right to free will.
    My thanks to those who have tried to give constructive advice.
  • OxonladyOxonlady Member Posts: 408 Pioneering
    Hi @foxuk, I understand your frustration with this ongoing problem. There must be different practices in Wales. I live in London and have had to use hospital transport regularly in the last six years. I have to travel in my wheelchair and the ambulances accommodate this. I have also seen people taken home on stretchers because they could not sit in a wheelchair. It seems that your wife falls in this category. If it can be done here in London, what is the law that's preventing the Welsh hospital from doing this? Would your MP or a local disability rights group know the answer to this? 

    As you say, you need practical answers. I was lucky to find a solicitor in London provided free by the Disability Law Service, a registered charity. Is there an equivalent in Wales who could help you and your wife? 


    Sorry I can't be of more help. Good luck. 


  • mikehughescqmikehughescq Member Posts: 6,620 Disability Gamechanger
    On the one hand 

    “This is a simple matter” and “This is a very simple matter”.

    On the other hand 

    “I wish life was as simple and sensible as you wish it to be”.

    I don’t read anyone saying this is simple. Certainly not me. 

    However, I do think that emotion is ruling due process here. It strikes me that this is being posted on a forum because perspective has been lost. That’s often understandable but this is no place for what is needed and it never will be.

    To start off publicly asserting that someone is being held “against their will” is a very serious accusation indeed but the other side of that is that very often decisions are made which are absolutely in the best interests of a person with which they and others will nevertheless disagree. That doesn’t make those decisions wrong. It means different people have different views and that is why a multi-disciplinary decision is the way forward. There is a process and it needs to be used. 

    Equally, to suggest that people on a public forum are being less than helpful because they rightly refuse to assist with the potentially illegal and potentially harmful removal of a person from a setting where we have literally no evidence at all of that persons view on their circumstances and no evidence as to what is currently happening and why the institution itself takes its alleged current view is clearly both disingenuous and skirting close to libel. None of us here can know the truth of this and none of us are acting like we do but equally no-one here is going to help you do something potentially illegal or harmful and on that basis I am going to ask that Scope, whilst they may wish to offer you expertise privately via email or their helpline, once again have allowed a thread to exist which plainly breaches the terms of the forum and it needs to be shut down.

    This has nothing to do with free will. It certainly has even less to do with passing judgement or just “asking for help”. It has everything to do with the need for timely advice from professionals as to what your legal options are and then adhering to those. 
  • Ross_ScopeRoss_Scope Posts: 4,151

    Scope community team

    Hi @foxuk

    I hope you are doing okay today. 

    It is a very tough situation that you find yourself in and both you and your wife have my best wishes and thoughts. I completely understand why this has caused you the level of distress that it has, and I do hope that you are able to be together again soon enough once given the green light.

    Members of the community will always offer their advice and experience with the best intentions and believe me that everybody here wants the best outcome for you both. 

    However in some cases there may be limitations to the level of advice that can be given here. Users can offer their experience and thoughts on your situation, and I hope that you have found some replies on here helpful, but I think you should be seeking legal advice. As mentioned above, this would help you figure out exactly what your options are and where you stand, which will help to guide you down the appropriate route.

    Before this thread starts down the path of discussing why you are asking this here, which is a discussion I would not want to take place, and because I think members seem to have provided all the suggestions they can at this stage, I am going to close it and provide below some of the resources suggested by other users:

    You were well within your right to ask your question on here, and I do hope that the community has been able to help you somewhat in terms of advice and signposting, I'm just sorry that we can't do further at this stage. Of course though, you will always have our full support and should you wish to discuss this further, our inbox is always open ([email protected]) and Scope's helpline is just a call away.

    Please do let us know how you get on.
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