Wonderful...being #Alive rather than #Waiting to die! I found myself responding with the tweet above on the subject of care home gardens. I wasn't complaining about the lack of gardens. On the contrary I was suggesting that I see care homes with lovely gardens all manicured beautifully but... I don’t see the residents spending time enjoying these lovely outdoor spaces, taking some fresh air, maybe some sun and yes, that much sought Vitamin D! My aunt has been a resident in one such care home since April this year. She now spends her days in bed or in a large bucket chair, in her room or in the lounge. She rarely visits the garden, which is just down the hall; unless I am visiting and can take her out in what I have to say is a very unwieldy, rather large armchair albeit on wheels!
Indeed each time I have embarked on our trip to the garden, there has been a moment when the 'chair' and I have had words!
We know that a wheelchair would be a much easier mode of transport but there is possibly a perceived safety risk . So how to manage that risk was our challenge.
We have spent ££££ on private physio because our Aunt did not make the criteria for NHS physio. Our aim, to get to a point where our Aunt could sit comfortably in a wheelchair. You see, our 'private' physios found on assessment, that she has some sitting balance, which confirmed our view . Why are we trying so hard to achieve this for her? That's easy - dignity. A wheelchair opens up a new world for our Aunt. It gives her a sense of the woman she was before her life changing stroke.
- The aunt who drove she and her friend to her favourite coffee shop each week, only 8 months ago.
- The aunt who visited us regularly , and who with her sister, my mother, looked after our labradoodle for a week while we were on holiday.
- The aunt who liked the outdoors , enjoyed the gardens of Hampton Court Palace and many other open spaces.
So what stands in the way of this, along with any of the other very small steps my Aunt is probably very able to take if she were only afforded an opportunity to try and then encouraged and enabled. A risk averse mind set, that's what. A seemingly insurmountable 'brick wall' to individualised and patient centred care. A straight jacket to 'protect' the person not from life itself, but from 'living'. The physios have said that our Aunt is safe in the wheelchair the NHS community physios have agreed. Therefore, that is the important bit. The risk has been properly managed. We, her advocates her loved ones, have understood that there is a risk and have sought to minimise it, through the proper channels. We all understand that she cannot sit for long periods of time or be left unsupervised, but an hour in the morning and again in the afternoon, to begin with, changes her life .
A little change but, with huge impact 'No. No No - 'We can't take the risk , we don't have the capacity' ,we are told by the Care Home. 'You are being 'unrealistic', they continue. 'We, know how your Aunt's best interests should be served. We have our DoLs assessment and a mental capacity report which puts us in control'!
Yes the 'paperwork' is all there . I have to say this care home are top notch at paperwork . The boxes are all ticked , and there is really very little for the CQC to find fault with. Is this the problem I wonder?
Can the requirement to 'comply' jeopardise quality of life. Are we being forced to consider our 'pin number' before we consider our mantra of 'patient centred care'?
Are we all tied up in a confusing knot of 'risk averseness' such that we cannot put one foot in front of the other before we have checked the 'paperwork'. We must tip toe very very carefully , with a desire to give our very best 'patient centred care' but knowing that in that courtroom battle of common sense v risk averseness, it is likely that risk averseness will win.
So where does that leave us as advocates of common sense in the provision of quality of life, and dignity therein. Do we plead,'you may be specialists in your field of healthcare but we, we know this woman, our aunt, my mothers Sister'. Can we please manage the risk, let's share the risk, let's try to find a way to make this happen for my aunt. Look at her smile as she is helped into a wheelchair it's worth it isn't it ? See the pleasure she gets from being wheeled into the garden easily. It's worth it isn't it? The sense of 'dignity' that my sister, an ITU nurse and I ,a former nurse can see, is restored to our aunt, makes the effort worthwhile, doesn't it?
Please, please, please can we manage risk in a way that the individual who is at risk, is still able to 'feel' alive? Must we be so risk averse that this post 'significant event' life is really only about 'waiting to die'? Is our Aunt just waiting to die or can we think about her 'best interests' together and collaboratively. Can we acknowledge your specialist knowledge about her as a patient and can you embrace our expert knowledge about her as a person? In short, can we 'share' that risk? I think its called co-production?
I would call it just plain old common sense. 'A basic ability to perceive, understand and judge things, which is shared by (“common to”) nearly all people and can reasonably be expected of nearly all people without any need for debate'.
I will finish with the tweet below. The one I responded to . The tweet that restores my faith and shows common sense is alive and kicking in some quarters. We must allow it to prevail by understanding the risk and finding a way to manage it.
We must imagine ourselves in the shoes of my aunt , or your aunt,my mother, your mother my father,your father, me or you and think about how long we might have to 'wait to die'.
Would we rather 'live' just a little, while we wait?