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Rules and Regulations …

It’s been three weeks since my most recent experiences with the daycare clinic at The National Hospital for Neurology and Neuro-surgery and I am still irritated when I think of it.  Not the treatment itself nor the attending nurses but, yet again, a process change that really makes life more difficult for the patients most in need of help from this specialist hospital unit.

To explain: I have been going to the National Hospital’s daycare clinic, when I need treatment, for about ten years now – 1-3 times per annum usually.  Prior to this, I was admitted as an in-paient each time which was a total nightmare of bureaucracy and crisis management.

Generally, I attend the clinic for three successive days, staying between 2-5 hours each day depending on their processing speed, any other tests I need and who I need to see.

We have a routine.  Cancelling carers, therapists and others, D takes time off work and stays with me throughout as I am usually in bad physical shape by the time I go – often with visual and physical malfunction issues which make me even more highly dependent on others than usual.

I attend the clinic in the afternoon – it is open until 8pm – because I am in a lot of pain in the morning and have no reason to be there for the morning rush (many attendees work and want to be in/out as quickly and early as possible). With people coming and going for treatment and tests, the clinic treatment rooms are never fully occupied and, in late afternoon as they wind down, occupancy is less than 50% so it’s normally a pretty relaxed – pleasant would be a stretch – experience.

Or it would be except that they keep changing the rules on us.  This time, when D and me turned up, we were told that no companions were allowed and D was not able to stay with me but could sit in a waiting room, behind a locked door, some ten yards away.

Finding this faintly ridiculous – in a half empty treatment room – and extremely inconvenient for me – being unable to use my hands and arms very well and suffering 60% loss of vision – I queried the policy.

Boom.  The full weight of bureaucracy fell upon me.  Apparently, if I did not agree to this, due to my high dependency needs, I would be considered too ‘unsafe’ to attend day clinic, treatment would be refused and I would have to wait for in-patient admittance.

Wow.  I was stunned.  Firstly, at the aggressive intransigent attitude.  Secondly, at the nonsense idea that this change was designed to improve my ‘safety’.  I pointed out that:

1. Daycare clinics are a service not a jail and I did not appreciate being locked in or D being locked out. I expect to come and go as I would at my GP’s or dentist’s clinic.

2. I function perfectly well in every day life with essential assistance for my high dependency needs and I have my own support to deal with these – hence D’s constant presence.  Taking away my necessary support disempowers and disables me – how can this be ‘safe’?  I am housebound without my care support and 100% dependent in a hospital without it which does not allow me to operate on the same basis as all other daycare patients.

3. Having attended this particular day clinic for the same treatment for a decade or so, how does depriving me of my personal support make me more ‘safe’ now than I have been previously? It, in fact, renders me far less safe as the National’s in-house staff cannot possible be as aware of, experienced with or available for me as my own personal carer who is with me 24/7 and fully understands my capabilities and that of my equipment in strange environments.

The clinic’s staff nurse responded that:

1. We are trying to improve throughput and efficiency by introducing routines that appear to work well in cancer clinics and, to do this, we have no space for companions to be in-situ. On cancer wards, this is accepted and well worked practice.

2. Our staff will fulfil your care needs while you are here. If they cannot, you are too high dependency for this unit.

3. It isn’t fair to allow carers if family and friends are banned.  Fairness demands that all companions are banned as it would be impossible to justify why some companions are allowed and others not. It would not be equable for everyone.

Whilst fully accepting the intent to improve throughput, I honestly felt like my head would explode at the rest of her reasoning but I stayed calm and reasonable, pointing out that:

1. In a specialist neurological hospital, high dependency care needs are very normal not a short-term end-of-life indication.  Many of us live with such needs for decades, frequently coming in for treatment and tests over that time, and we manage our day-to-day living with essential personal care i.e. another person to assist us.  This is how we create a level playing field in our society for the dependent.  If such support is taken away, the playing field is not level.  We – the highly dependent – become disempowered and disadvantaged and that is unfair on those of us who most need support.

2.  The idea that daycare clinic staff are able to provide care support is optimistic at best.  Surely, to improve throughput, their time is best spent on essential medical needs not personal care.  By banning personal carers and classifying those who need them as too high dependency, this policy immediately excludes from speedy daycare treatment people like me … and yet, with D as my carer, I have attended this clinic with no problem for years – as, no doubt, have others – fondly imagining the personal support given to be helpful.  Surely, in a walk-in clinic at a neurological hospital, a personal carer should be welcomed not banned.  We are still only looking at maybe 10% of patients who have need of one.

3. If any member of staff at this specialist neurological hospital has a problem explaining to an able-bodied person why some of us need a carer/companion who is not just there to hold our hand then it rather begs the question as to their suitability for their role, no?  Ditto for those who cannot see the essential difference between already diagnosed cancer patients receiving day clinic treatments and those with very long term disabling chronic neurological illnesses – um, yes, that would be dependency issues ( not saying cancer patients don’t have these but they are a more regular feature in those of us with severe neuro problems).

4. Unlike at cancer day centres, many of us at The National come in for tests or test results because we are undiagnosed.  We get diagnoses here, often horrible ones, for the first time.  Illnesses and conditions that may decimate our lives.  To deny us the comfort of a partner/companion at this time is, to my mind, barbaric.  To have that partner locked outside as we sob and weep, missing half of what we are told, our minds blank with horror, and no questions remembered,  is beyond cruel. And having an ill-trained nurse trot out platitudes about ‘having to stay positive’ at the moment we are given the worst news of our lives, really, this does not make for good hospital policy … and, yes, this did happen whilst I was there to someone else whose husband was locked out as she wept.  Terribly inhumane as policies go.

And that was it.  The staff nurse thanked me for my feedback, said the policy was not yet finalised and my points would be considered.  I had already realised that, for this visit, she would not want to lose face by giving way.

And, I coped.  It was a bit of a pain but, for the few hours and days, I was there, I grit my teeth and got through it.

I just came away thinking, grrr.  Shouldn’t this all be so obvious?  With even a little goodwill and understanding, this could all be made workable and a lot less stressful.  Why, why, why, do changes rarely seem to make life easier?




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