9 replies to this topic

[Rebel UK]

Hi Guys,

New here, just found it today. I'm suffering from Dysreflexia at the moment and am looking for answers, which brought me here, I was admitted to my local NHS hospital sunday night suffering badly every time I lay down with Dysreflexia, it turns out I seem to have three problems at once, two now diagnosed, one yet to be resolved, however, I was appalled at the inadequacy of my local NHS hospital, to deal with me properly, not only did they not know what Autonomic Dysreflexia was, they didn't have a clue about skin management in severely disabled people, in fact in both A&E and eventually on the ward, they didn't have any air mattresses and no damn pillows, I was totally disheartened, and just wanted to go home.

So I wondered if anyone has ever used, or tried to use BUPA as a Quadraplegic patient.

Thanks

Zolly

[kewlcatkez]

Rebel UK, on Oct 26 2007, 06:14 PM, said:

the inadequacy of my local NHS hospital, to deal with me properly, not only did they not know what Autonomic Dysreflexia was, they didn't have a clue about skin management in severely disabled people, in faqct in both A&E and eventually on the ward, Thanks

Hi Zolly,

I am a fellow disabled person, who was a practising RN ( staff nurse, Cardiology) not so long ago. Therefore I have a pretty good take on how the system works.

What I would say is that most Private hospitals are usually 'manned' by Nurses many of whom are not used to an acute setting ~ unless hey do a bit of bank here and there or have two jobs! As you know, dysreflexia is acute and serious, so in terms of diagnosis and knowledge of AD, you would probably not be any better and may be even worse than the NHS in this situation. Of course they are very good at what they do ( primarily elective surgeries, routine evaluations, primary diagnosis of routinely found phenomenon etc). Indeed it may be that a private stay ends up being paid for by you or Health Insurance, yet you may be in the local hospital side room or ward. Also the regular consultants are NHS drs who have a side line to earn more cash. Sometimes drs do this private work to have the chance to do certain surgeries or procedures which they have little time to do or its not their primary field in the NHS etc. You would be well looked after in terms of one to one care but the actual knowledge would be about the same in my experience.

I used to work in CCU and we would many times have patients transferred to us b/c they were unstable, had a myocardial infarction ( h/attack) whilst they were in the private hosp or had problems with diabetes or some other preexisting or new found problem. This is b/c the private hospitals notoriously don't have the level of ICU/CCU/HDU that the NHS has. Of course they do have an HDU etc of sorts but it is for intense monitoring and intervention of patients, not patients who are very poorly. This is why many private hosp are based nearby or in the grounds or vacinity of NHS counterparts...Ok, sorry for the diatribe, just want to set the background to my 'claims'. Hope this helps...

What I would advise is that you get in touch with the Spinal Injuries unit. The one you attended would be a good start, as they will have your details most probably, but any unit would be ok. They can then either see you or liaise with your local drs, neurologist etc etc.

A good start pre this happening ( if you haven't already) would be getting drs to check for UTI's, ingrowing toenails, etc..

here is a list of possible causes ( to help diagnose the 3rd 'cause' and reassure re the others..:

Quote

In general, noxious stimuli (irritants, things which would ordinarily cause pain) to areas of body below the level of spinal injury. Things to consider include:

Bladder (most common) - from overstretch or irritation of bladder wall
Urinary tract infection
Urinary retention
Blocked catheter
Overfilled collection bag
Non-compliance with intermittent catheterization program

Bowel - over distention or irritation
Constipation / impaction
Distention during bowel program (digital stimulation)
Hemorrhoids or anal fissures
Infection or irritation (eg. appendicitis)

Skin-related Disorders
Any direct irritant below the level of injury (eg. - prolonged pressure by object in shoe or chair, cut, bruise, abrasion)
Pressure sores (decubitus ulcer)
Ingrown toenails
Burns (eg. - sunburn, burns from using hot water)
Tight or restrictive clothing or pressure to skin from sitting on wrinkled clothing

Sexual Activity
Over stimulation during sexual activity [stimuli to the pelvic region which would ordinarily be painful if sensation were present]
Menstrual cramps
Labor and delivery

Other
Heterotopic ossification ("Myositis ossificans", "Heterotopic bone")
Acute abdominal conditions (gastric ulcer, colitis, peritonitis)
Skeletal fractures

Above taken from SCI-INFO pages, pls follow this LINK, thanks.

I wish you all the best and hope you see my message in the way I intended. I do not wish to teach my grandma how to suck eggs ` being a RN by trade is hard not to go on a bit!

Take care,

Best wishes,

k

Edited by kewlcatkez, 26 October 2007 - 05:38 PM.

[kewlcatkez]

Hi again, further to my above reply ( so sorry ot was so long), I wanted to pick up something you said:

Quote

they didn't have any air mattresses and no damn pillows, I was totally disheartened, and just wanted to go home.

I know that in reality things do not always go according to how they should, but next time you are in this situation ( i hope not) please do the following:

ASK for your "Waterlow assessment" score ( looks at a person's risk of obtaining a pressure sore based upon several criteria, it is flawed but will 'flag' an SCI or similarly disabled person as HIGH/VERY HIGH risk.

The ADMITTING Nurse and OR DR is responsible for doing this. It is one of the only pieces of paperwork which should be done even if the person is not admitted. If the person is waiting in AED on a trolley/chair, they have to be assessed. It should never be missed ( unless someone is in cardiac arrest)

After you have got this, they will have no ccvhoice but to get you a matteress which is relevant to your risk category. IF they do not have one available at that time b/c they are all in use etc, they are legally obliged to obtain one. I know that HILROM is the NHS contracted provider in many areas. ( They loan them and they are master cleaned inbetween patients) They do have to be sent back to the provider after every patient and for infection control reasons they can not be simply cleaned and given to the next patient.

As for the pillows they must do their upmost to get some for you ( as far as resonably possible). It can be very stressful to feed 5000 with a loaf! If they do not manage to find any, and if you have someone who is able to do this for you, you can bring in your own pillows. The hospitals now tend to have a policy that only new sealed pillows can be brought in due to infection control ( MRSA etc). I did this though when I was having rehab etc and we bought the cheapo ones from ASDA which were 4 for a £10 or something like that and so it was worth it for my comfort and the like.

Ok, I hope I didn;t kill you with boredom! I hope all goes well,

Take care,

k

*let me know if you are interested in the info re Waterlow scale, it can be useful to sort of give the nurses/drs a push with that lil bit of knowledge!

[Rebel UK]

kewlcatkez, on Oct 26 2007, 06:59 PM, said:

Hi again, further to my above reply ( so sorry ot was so long), I wanted to pick up something you said:

Quote

they didn't have any air mattresses and no damn pillows, I was totally disheartened, and just wanted to go home.

I know that in reality things do not always go according to how they should, but next time you are in this situation ( i hope not) please do the following:

ASK for your "Waterlow assessment" score ( looks at a person's risk of obtaining a pressure sore based upon several criteria, it is flawed but will 'flag' an SCI or similarly disabled person as HIGH/VERY HIGH risk.

The ADMITTING Nurse and OR DR is responsible for doing this. It is one of the only pieces of paperwork which should be done even if the person is not admitted. If the person is waiting in AED on a trolley/chair, they have to be assessed. It should never be missed ( unless someone is in cardiac arrest)

After you have got this, they will have no ccvhoice but to get you a matteress which is relevant to your risk category. IF they do not have one available at that time b/c they are all in use etc, they are legally obliged to obtain one. I know that HILROM is the NHS contracted provider in many areas. ( They loan them and they are master cleaned inbetween patients) They do have to be sent back to the provider after every patient and for infection control reasons they can not be simply cleaned and given to the next patient.

As for the pillows they must do their upmost to get some for you ( as far as resonably possible). It can be very stressful to feed 5000 with a loaf! If they do not manage to find any, and if you have someone who is able to do this for you, you can bring in your own pillows. The hospitals now tend to have a policy that only new sealed pillows can be brought in due to infection control ( MRSA etc). I did this though when I was having rehab etc and we bought the cheapo ones from ASDA which were 4 for a £10 or something like that and so it was worth it for my comfort and the like.

Ok, I hope I didn;t kill you with boredom! I hope all goes well,

Take care,

k

*let me know if you are interested in the info re Waterlow scale, it can be useful to sort of give the nurses/drs a push with that lil bit of knowledge!

Hi Kes (I assume that's correct)

Thanks for the explanations and info, very much appreciated, re: the waterflow scale, yes I am interested, so if you could point me in the right direction, I'd be grateful (iI'll google it shortly).

Yup, immediately after I came home (5pm Monday) I phoned Stanmore SIU Community Liaison Sister and left a message, On Tuesday my GP came to see me with the results of the Urine sample I'd sent in the previous week, indicating a UTI, also, he phoned the Hospital I was admitted to who also did a urine sample on Monday,, both results indicating the same UTI, and same sensitivity. I was put on an antibiotic immediately. Also, the SIU called me following up on my call, I'd recently been in for Urodynamics and ultrasound and was put on the list for surgery to my urethral stent, Mr Shah told me 'If you have a problem before surgery, call us' which I had done.

Now, because of the need for surgery, I felt the restriction in my stent was causing the UTI's (3 in 1 month) and needed serious consideration AND that because of this I was retaining fluid and this was causing me to go autonomic, this I needed them to check on. They called me in on thursday, in the meantime, I was still going autonomic when I lay down at night. At the same time, over the last month I'd been complaining to my GP of terrible stomach pains, especially in the right side below the ribcage and across my midriff, I couldn't discount the uti's being the cause but I'd never been this bad before and gone autonomic. Over the days since being admitted on Sunday I found I could get away with lying on my back (not ideal when you want to give your backside some relief overnight), propped up with pillows, and not get too bad attacks, or on my left side and suffer manageable attacks but not on my right side.

On Thursday I saw my consultants at Stanmore, they assessed my condition and decided to temporarily insert an indwelling catheter until I have the surgery, this immediately eliminated the constant distended bladder and relieved the dysreflexia, so we hoped this had solved the problem, but it proves not to be the case. Today my GP did an Endoscopy on me back at Hospital (yes fortunately for me my own GP performs these procedures at our local NHS hospital) the endoscopy showed no inflammation in my stomach or duodenum, nor any ulcers or damage.

So, now, I'm looking at possible Gallstones (which brought me here today) as the pain and discomfort is similar to that described for someone suffering from gallstones, and also, since i always go autonomic when trying to lay on my right side. Unfortunately Stanmore has no A&E and no free beds for me so I'm probably gonna have to get admitted to my local general hospital if I can't hang on till my GP organizes a scan for me

I'm just not confident in my Local General Hospital's ability to properly care for me (

However, If i have to get myself admitted, I'll use the Waterflow Scale point and take some pillows with me, the thought of their hospital food, however, also makes me ill.

Thanks for the informative and swift reply Kes

Zol

Edited by Rebel UK, 26 October 2007 - 07:58 PM.

[kewlcatkez]

Rebel UK, on Oct 26 2007, 08:55 PM, said:

So, now, I'm looking at possible Gallstones (which brought me here today) as the pain and discomfort is similar to that described for someone suffering from gallstones, and also, since i always go autonomic when trying to lay on my right side. Unfortunately Stanmore has no A&E and no free beds for me so I'm probably gonna have to get admitted to my local general hospital if I can't hang on till my GP organizes a scan for me

I'm just not confident in my Local General Hospital's ability to properly care for me (

However, If i have to get myself admitted, I'll use the Waterflow Scale point and take some pillows with me, the thought of their hospital food, however, also makes me ill.

Thanks for the informative and swift reply Kes

Zol

Hi again Zol,

SOrry to read that it might be gallstones. However, given your history of urethral stent and the way in which the dysreflexia subsided some when the indwelling foley was inserted..well that makes me think of Urinary or Kidney stones (increased risk that stones can pass into the kidney or bladder when SCI). I must stress that I am not in any way a SCI Nurse etc so this is just my impression with nursing folks whereby one or two did have this problem ( on guy had CP and had urinary stones, the other female had Guillane Barre syndrome and had an MI).

Urinary stones are most common in Indwelling ( long term) cath users but can affect those who IC too. Perhaps the stent is a factor here ( not sure but worth asking).

I have copied and pasted some info below from spinal.co.uk Click HERE

Quote

Spinal Injuries Association Page 38 of 48
Kidney Stones
Stones that form in the kidneys may not cause any symptoms at all in
people with SCI. They may therefore simply be found on routine
screening x-rays or USSs. They can however cause pain, blood in the
urine (haematuria), persistent or frequent urinary infection, deterioration
in kidney function or autonomic symptoms in those prone to autonomic
dysreflexia. Your medical team will therefore probably want to get x-rays
or scans of the kidneys to check for stones if any of these symptoms
occur.

Its worth pointing out that kidney/urinary stones can cause colicky type 'flank' ( side pain) similar ton that which gallstones cause.

I am NOT saying that your dr is wrong and that you have this instyead of gallstones, but it is sopmething I would look into since catheter use etc can increase risk. Also recurrent UTI's are a feature of both Urinary and Kidney stones.

It just seems odd to me that you had a settling of your symptoms with the catheter placement. ( stones are asymptomatic in the most part til they start to move down into the urethra..to pee them out!).

Anyway sorry ( again) to go on. Just another thing to look at etc. I will post the waterlow stuff in a bit as my lil boy is awake still annd I need to see to him!

Take care,



K

[kewlcatkez]

Hi,

LoraB, Sorry to read of your and your husband's experiences with the NHS and private sector.


Although I have had 'issues' of my own with the NHS, I do feel that it is important to point out that unfortunately like anything else, it is a 'postcode' lottery to some extent, with some NHS hospitals being centres of excellence, whilst others are struggling to make a couple of 'stars'. Of course there are many in between.

What I mean is that it is very dependent upon the situation the hospital is in and the resources etc it has.

Also it is worth looking a little at what LoraB said:

Quote

Once you get admitted to a generasl hospital it is impossible, in our bitter experience to get
transferred.

In some situations this is true, especially when the consultant and team at the local hospital deem the individual haemodynamically stable and therefore able to wait. Then the priority will be to those who are not currently in a bed etc, even at another hospital/centre. Not saying this is right, but it is what happens, unfortunately.

This is no way aimed at LoraB or anyone else here, but I wanted to convey my experiences ( professional and person) on this difficult subject.

We had a similar situation when I was in my local hospital needing to be transferred to specialist centre and also when my Sister-in-law was seriously ill with a Mesenteric artery clot ( not spinal related but she had to have her small bowel removed , TPN feeding initiated and Haemorrhaged resulting in her recorded 'death' a couple of times on admission.). Although our situations different and our admissions in different years, once we were both made/deemed stable we were considered to a safe wait i think. However, in my S-I-L's case, this situation actually helped speed up things and the fact that she was in hospital, and their need to clear their beds' led to her transfer being quicker than anticipated to the centre of excellence ( still many weeks).

So ultimately if the person is deemed stable ~ even when they are poorly, they can sometimes face a wait.

As a RN ( in a recent life before disability) I have seen these situations professionally many times. I am not meaning to defend such circumstances ( as I said I have been on the receiveing end etc).
I would suggest that family memebers liaise with the PALS ( patient Advisory Liason Service), speak with the medical director ( by rtinging and asking for thei number or their secretary's) and also speak with the Consultant ( make appointment with PA/Secretary) Keep doing this as I assure you if you repeatedly have such meetings and make such enquiries it will make a difference. It is not fair, right or justified, but in my experience, those who either themselves or their family repeatedly pursue this DO get a better deal than those who do not.


I understand that this is probably something which people are already doing, but wanted to post it just in case. I hope that this message is received in the way and intent it was written.

take care,

k

Edited by kewlcatkez, 27 October 2007 - 09:21 AM.

[kewlcatkez]

ok, just thought that I would make a separate post with the Waterlow stuff in.

A copy of the 'chart' which is commonly used in UK hospitals can be found HERE

The full website featuring the WAterlow information etc can be found HERE

Information regarding the reliabilty of the waterlow can be found @ www.personal.leeds.ac.uk/~hcscah/pdfs/waterlow_report.pdf, This is a good article/resource. (PDF so ? why no link).

Please see GP note book, HEREfor a view of its effectiveness.

The BMJ and BJ/Nursing have looked into the effectiveness of the "waterlow" compared with other 'tools'.

A copy of a 'real life' Waterlow tool in use can be found @
www.tamesideandglossop-pct.nhs.uk/ documents/PCTNURSINGASSESSMENTFORM4.doc (sorry no link, ? if b/c its a pdf??)


As I said, it is not perfect, but it takes little time and favours those who have SCI etc. It is used by most if not all of the UK NHS hospitals. Ultimately some sort of relaibale, evidence based and recored Skin intergrity score should be used during a prolonged wait in hospital, even if the person is not admitted.

I have other links and information and will pass it along if you require it,

I hope this helps,

K

Edited by kewlcatkez, 27 October 2007 - 10:01 AM.

[Rebel UK]

kewlcatkez, on Oct 27 2007, 10:55 AM, said:

As I said, it is not perfect, but it takes little time and favours those who have SCI etc. It is used by most if not all of the UK NHS hospitals. Ultimately some sort of relaibale, evidence based and recored Skin intergrity score should be used during a prolonged wait in hospital, even if the person is not admitted.

I have other links and information and will pass it along if you require it,

I hope this helps,

K

Hi Kez

Thanks for that I'll go read up

I don't use catheter drainage normally, just conveen (the stent enable free passage in the event the sphincter muscle decides not to open, thereby avoiding retention and reflux) and my urodynamics and ultrasound tests last month, showed no inflammation or stones in the kidneys or urinary tracts. I accept stones can develop in the month that followed, but, my pains in my sxide and stomach area (Duodenum) were apparent then and I reported this to Mr Shah and to my GP. The assumption at the time was probable symptoms of another UTI but antibiotics courses didn't relieve the pain. And it's only in the last week that I've started going autonomic.

Anyway, I'm going in to Stanmore on Thursday for a Dexta Scan, I'll nag them to do an abdominal scan too and hope to get an idea of anything there.

Thanks for the help and responses tho guys, much appreciated.

Zol

[kewlcatkez]

Hi Zol,

sorry I didn't realise that you just had an annual followup/urodynamics and u/s. It is worth mentioning tho that Uric Acid xaused/made up stones can sometimes be missed on u/s and x-ray. However it is more common just missed in x-ray these days and that is fairly rare.

Best wishes anyway

take care

k