Thank you to Julia Wingfield from Essex for sharing her story.
‘On the 6th February 2018 the following post appeared on the National Spinal Injuries Centre Facebook page – “Does anyone know the current waiting time for re admissions please?”
112 comments followed. There would have been more only the person who originally asked the question said she would delete the post if we continued commenting because she was being bombarded with messages.
In 1986 aged 19 I crashed my motorbike, 3 days later I was transferred to Stoke Mandeville and so begun my long relationship with the hospital that I refer to as my second home.
The nature of paralyses means I need ongoing care and from time to time treatment requiring re-admission to the unit. In 1986 I was told my life expectancy was 15-20 years, 31 years later I was told my life expectancy was the same as an ordinary person. I’ve always received excellent care and attention from the whole team, I believe the reason I’m alive is because of that care, given first in 1986 and in subsequent years, but now I desperately need that help again I can’t get a bed on the unit.
I was told in Outpatients it was due to Black Measures. In my mind I thought ‘Winter Crisis’ applied to general hospitals with large admissions of people with flu like symptoms or other seasonal ailments, but I’ve learnt very quickly that The National Spinal Injuries Unit no longer gives priority to spinal injured patients. Instead beds and a whole Ward have been commandeered by Buckinghamshire Healthcare Trust to alleviate the pressure in other areas caused by that ‘Winter Crisis’.
So I’m in bed at home, with daily nursing care from local services and 1 hours care from a local agency to assist with my personal care, meals etc because beds on the National Spinal Injuries Unit are being used as an overflow when Wycombe Hospital – part of the Buckinghamshire Healthcare Trust has been downgraded. Am I missing something? I’ve read various Save Wycombe Hospital campaign pages with celebrity endorsements, I’ve read about people forced to make long, often distressing journeys to Stoke Mandeville while Wycombe Hospital which is on their doorstep can’t accommodate their needs because services are being centralized at Stoke Mandeville.
My medical needs have been ongoing since May 2016, I’ve been in bed since November 2017, I’ve currently got another infection in my wound so I’m back on antibiotics, I’ve developed a painful bursa on my elbow from lifting myself to relieve pressure and my shoulders are causing me constant pain. I’ve been given a date for admission in March, but I’ve also been warned that date is not guaranteed and likely to be cancelled.
Buckinghamshire Healthcare Trust Board of Directors consists of 15 people Chaired by Hattie Llewelyn-Davies, I’ve written to all of them.
I’m not the only spinal patient in this situation; a number of critically poorly and vulnerable people are waiting for beds. I know that as a fact, I’ve read their testimonies on the NSIC Facebook page; I also know that they’re writing letters.
I’m a member of the public with a spinal injury desperate to get well and be a productive member of society, I don’t begin to understand the challenges faced by Hattie Llewelyn-Davies and her Board of Directors at Buckinghamshire Healthcare Trust, but it seems to me that Stoke Mandeville Hospital is bursting at the seams and Wycombe Hospital has been downgraded, if wards could be reopened at Wycombe wouldn’t that take pressure off Stoke Mandeville and the National Spinal Injuries Centre could offer beds to the spinal patients that they were and are intended for?’
Thank you to Barry Wells from Aylesbury for sharing his letter:
”I write to you regarding the protected bed status of The National Spinal Injuries Centre (NSIC) based at Stoke Mandeville Hospital, Aylesbury Bucks.
The NSIC was built for spinal injured people specifically. The building was paid for by patients, past and present, members of the public and charitable funds for this very specialised purpose. As a child growing up in Aylesbury I took part in sponsored events myself, helping to raise money for Spinal patients to have a unit that cares for spinal patients.
Little did I realise that I would one day become a spinal patient myself and need the specialist care and rehabilitation that the NSIC offers.
I had my accident in 1994 and have been under the care of the NSIC since that time and have returned many times over the years as an inpatient for pressure sores, broken bones, shoulder surgery etc….
Last year I was admitted twice, firstly for a below knee amputation, for which I spent 2 months on St Patrick Ward. This was followed by shoulder surgery, which was requested during my stay for the above mentioned amputation (January & February) after a scan showed that the tendon in my right shoulder was enflamed and needed decompression.
I was admitted to High Wycombe Hospital for my shoulder surgery in September, a whole 7 months after the spinal referral, by which time the level of surgery I needed had increased from a simple decompression (4-5 days in the NSIC to recover) to a tendon repair and decompression, which meant 6 weeks in the NSIC before I could even move my arm let alone start using it. Again I was an inpatient on St Patrick Ward for a 2 month period (September – November). The day after my surgery I was moved from a 6 bed bay, which was full of patients, to one that was empty, except for myself, to await transport back to the NSIC which went ahead later that day.
During both stays at the NSIC I received excellent care from the staff, just as I’ve always done. However on both occasions I’ve had to share bays with patients from the General hospital, many of whom come from far and wide due to High Wycombe closing its A&E department along with many of their wards.
The patients from the General Hospital have suffered a number of different issues including dementia, victims of falls, drink and drug problems, accidents at work, high and low blood pressure, high temperature etc.
On one occasion, whilst in bed recovering from my amputation, an elderly lady wandered onto an all-male bay and looked somewhat confused. I asked her if she was ok and could I help in anyway, thinking she may be looking for the toilet. She started talking to me as if she knew me and started to
get worked up, I could tell she was suffering from some form of dementia (as my mother sadly suffered this horrific illness), and put my hands up with palms out to try calming the lady down. She then became verbally aggressive and started shouting at me to get out of bed, I called for a nurse and tried calming the situation as did the nurse and HCA that left their patients to attend to this now aggressive lady. The staff took care of the lady and returned her to her bed area, however the experience left me extremely concerned about the vulnerability of some of my fellow spinal patients, especially given that many are tetraplegic with limited or no use of their arms.
Please just think about that spinal patient’s vulnerability for a moment…
On another occasion a gentleman with a high temperature, in the bed next to me, couldn’t settle at night due to the heat on the ward, (which is needed for those with higher spinal injuries), as a result he would go walk about closely followed by staff members who were trying to get the gentleman back to bed. One morning he refused to leave the day room, where he had spent the night, and it took 4 members of staff over an hour to get the gentleman back to his bed area for treatment.
On both of these occasions (and believe me there are many more) the specialist (Spinal) staff are being taken away from their spinal patients and the care that was being given, which could be taking care of ablutions, feeding the patient, issuing medication a whole number of things, which has a knock on effect, not only for the spinal patient that the staff left whilst attending this issue, but for every patient the staff members (s) had on their list that day, and all because the spinal staff are tending to patients from the General Hospital.
While many need to be in hospital I don’t think they should take priority on the spinal unit, over the spinal patients for which it was intended and indeed what the staff are highly trained for. Especially given that the fact that there are empty wards in High Wycombe Hospital.
I can’t sing the spinal staff’s praises loud enough and this letter is in not aimed at knocking them in anyway. They are run off of their feet doing a fantastic job, but all too often are having to deal with non-spinal issues which are increasing more and more each year.
I visited the unit last week and was told that there are now patients from the General hospital ON EVERY WARD, which is extremely alarming because we have many hundreds of spinal patients in desperate need of the specialist care the NSIC offers but instead of receiving that care they’re left in limbo at home whilst their injury deteriorates and they become susceptible to infections like Sepsis, which then becomes life threatening.
Unfortunately, having been autonomous since 1944, I’m now told that the NSIC was moved into the specialist services directorate and key decisions have been made by management with no spinal injury experience. Spinal patients have no alternative to spinal specialists and facilities.
I don’t begin to understand the challenges faced by Hattie Llewelyn-Davies and her Board of Directors at Buckingham Healthcare Trust, but it seems to me that Stoke Mandeville Hospital is bursting at the seams and High Wycombe Hospital has been downgraded, if wards could be reopened at Wycombe wouldn’t that take pressure off Stoke Mandeville and the National Spinal Injuries Centre could offer beds to the spinal patients that they were and are intended for?
I look forward to your reply, Barry Wells.”
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