A Patients Perspective

I wrote the following after a year in hospital. I used an adapted laptop and worked every day in a small office. It took me several weeks, its un-finished and un-edited.


Stoke Mandeville Hospital: A Patient’s Perspective

Why do we spend the huge levels on health that we do, and still not cope with the budget?
Are we concerned with rehabilitating people with spinal injuries?
Do we care about the quality of life of SI people?
How well do we perform vs other nations?

How well do we deal with the range of disabilities?

I don’t have the answers to these questions but will try to address issues experienced during my stay at Stoke Mandeville Hospital spinal unit. as a tetraplegic patient

My name is Julius Ladwig, I have been injured since the 8^th June 2002. I am severely disabled, a Tetraplegic, at C2/3. All my movement is affected, from my nose to my toes, in other words I cannot speak, swallow, use my arms, or walk. Due to the incomplete nature of the injury, I have had some recovery to my speech and swallow, and some hand movement (although this is very small).

My experiences over the last year have been the basis for much of this document, but I have drawn on years of experience at management level in a large multinational.

This has been written with the use of a specially adapted computer.

The role of the hospital / NHS

The sooner a person can return to an independent life the better for them, society and the country. The NSIC has devoted itself to ensuring that people with spinal injury are able to achieve a level of independence and dignity to enable them to return to being productive members of society.

The role of the hospital / NHS is to provide facilities and an environment so that a patient will be rehabilitated:

1. quickly,

2. effectively,

3. efficiently.

To achieve this an holistic approach to care is essential, encompassing all needs: –

1. physical

2. emotional./psychological

3. social

4. spiritual

Essential points that should be remembered throughout:

- staff are at the heart of success of this process.

- patient’s duty is to maximise the benefits of being at the NSIC

- a patients rehabilitation is likely to be a long term effort therefore returning to normal life will be traumatic.

A Patient`s Personal Perspective

The majority of patients would experience some aspects of this document but for completeness, their views are essential.

From being bedridden for several months to now where I’m mobile (in a powered wheelchair) I have experienced 3 wards and many different staff, that I have decided to write about my experiences. I have in general seen a large commitment by the staff. Unfortunately this has diminished with recent moves to change the wards. I hope this will give some guidance to the reader.

Tetraplegia and its implications

Physical Needs

Tetraplegia can have many different forms, but most tetraplegics are very reliant on others for all aspects of daily care. The result of this is a greater burden on hospital staff. No account of this has been taken for any possible changes to the wards organisation. The recommendation for my level of disability is, 1 full time carer with part-time help for transfers. However, the staff levels have got worse as I have moved along the path of rehabilitation, which has resulted in less opportunity to participate in activities to help my rehabilitation. For example I have skipped several hydrotherapy sessions because of insufficient staff to care for tetraplegics. This cannot be blamed on individuals on the wards but on the management’s staffing of the wards and other de wrt tetraplegics. No differentiation is made between different patients ito staffing. This results in a greater disparity between those patients with severe disabilities and the others. This does little to prepare one for life in society.

If any work-study were to be done on the wards it would show a large difference between the workloads of staff when the number of tetraplegics is varied. This is even more alarming if you are dealing with severely disabled patients (where the amount of time spent dealing with patients dramatically increases).

Small needs: no longer exist, as even insignificant needs become important eg. Cutting ones toenails becomes life threatening if not done timeously.

Emotional/psychological Needs

Aside from the physical care staff do not have the time or training to deal with emotional or psychological needs. To try and separate these into the different aspects is a not always possible or advisable. A human being is a complex mixture of all these elements

Touch and relationships:

The most difficult aspect of emotional change is that of loneliness. This experience (Tetraplegia) is extremely isolating, as one is separated from people, in a tactile sense. Any contact or touch is functional and increases the sense of loneliness. To initiate any physical contact is not possible, at my level, so any form of contact is entirely dependent on others. If the physical disability extends into speech, this widens the sense of loneliness.

This makes disputes with loved ones very difficult to resolve.

This situation is made more frustrating with speaking difficulties and results in much misunderstanding and consequently, strain to the relationship.

Support for the whole person, must include the other family members. This is essential to ensure a complete person will be returned to society.

Mood

Mood fluctuations for any medical condition are well documented and understood, it can only be said that I have found it very difficult as:

- I would normally go off and do something to improve my mood.

- My speech was too poor to allow me to express my self or my bad mood in an objective way leading to a further deterioration of the mood.

- I felt incredibly guilty about any bad attitude, because, “people are doing me a favour “ each time I had something done (drink, brushing my teeth or helping me with a phone call).

These feelings became very confusing when I was accused of “monopolising the staff “. I was in real danger of suicide on many of those occasions and I still have feelings of poor self worth as a consequence.

Intellectual stimulation

The inability to use the hands and arms makes me totally reliant on people for any aspect of mental stimulation. I need someone to turn pages, change tapes or disks or simply change channels. This is all manageable if my voice was strong enough to call out when I wanted help but I lived in a silent world where I relied solely on eye contact for any acknowledgement of my presence. So the joy of reading was robbed, likewise all other activities.

The development of internet and computer facilities has helped to alleviate much of the frustration associated with this. Expression and dialog were impossible and remain difficult if not impossible to a meaningful extent. So the world has remained a silent place for me.

Fears

The world of paraplegia and tetraplegia is dominated by an over riding sense of fear. There is pitiful help available and I found myself floundering in the treacherous waters not able to and too scared to ask for the help I so badly needed. The system can save your life and simply stand back while your spirit dies.

Getting past these fears is one of my biggest challenges.

Would my children still want to see me?

How long before they got bored with me?

How long will I live?

Would I be able to work?
How?
Will I ever have sex again?

Will I be able to travel?
How will I keep my relationships?

Frustration

Normal life is full of frustrations every moment of this injury has been fraught with completely basic problems. I think the worst was and still is – poor speech. Having something to say and being unable to be heard or understood is like watching your life on a TV screen.

Daily living

Daily living is a constant fight against severe pain and discomfort, fear and insecurity, the urge to give up and people’s prejudices. The day is dominated by tasks that most of us wouldn’t even mention. Like toiletting and dressing (1-2hrs).

Links with the community

This is the biggest strength of the social care system in the U.K. but it has become its biggest failing in this regard. To save a life and rehabilitate a person back into normal life is what all the fuss is about. It results in a waste of time, money and valuable bed space if the process cannot do so effectively.

Transfer back home