Patient Stories – Will we learn?

Today the Patients Association published a report ‘Patient Stories’ (PDF). It focuses on thirteen different stories. These are stories directly about the experiences of patients through hospital systems and discharges. Some are told by family members when the person involved and some are told directly.  Some are anonymised and one is from a doctor who received treatment herself.

The format of ‘telling stories’ is a good one because it makes for interesting reporting. It personalises tales that we know about poorly managed hospital discharges which take place before they should because we hear the voices of those directly affected and it is easy to see the lack of humanity in some of the systems that exist in acute health care.

Sometimes what is remembered is a single comment which may have been made by a busy member of staff in an offhand manner, for example, in relation to Margaret Allen, her sister writes

‘my (other) sister called the hospital to enquire after Margaret’s health before her death. The answering nurse replied that Margaret was ‘screaming away nicely’ and held the phone out for my sister to hear her cries’.

There are some shocking details in some of the stories of miscommunication, arrogance and rudeness of staff, basic care not being given but sometimes it is these snippets of language which are telling in terms of respect and attitudes of professionals towards staff.

While it may be possible to write these off as ‘individual stories’, I think that would be an massive error because there is an enormous amount of learning and themes which can be traced – not just through these stories but through the similar ones that have emerged over many years.

There is a consistent lack of flexibility and a lack of listening in these processes.

An example would be in the story of George Robertshaw who was admitted to hospital and was discharged in a way that his GP felt was ‘unsafe’ due to it being so rapid and was discharged in thin pyjamas in the winter – so that when carers did arrive to him he was cold, hungry, very thirsty and still not well.

His daughter writes

‘Following my father’s death, I again spoke to someone to inform them of my father’s demise and that I would be making a formal complaint re procedures. She told me directly that she would ask a nursing director to phone me back in a day or two, This never happened. No call, no communication, no nothing. I again rang and I was told that they had informed whoever it would be and that they would remind them. I got the impression that the relevant person was present but did not wish to speak to me and was telling the person on the phone what to say

Again, this could be claimed to be an isolated incident but as a rule of thumb and as someone who takes quite a lot of verbal complaints about the services that I provide, I tend to assume for everyone one person who complains or whose family complains, there are far more who will not have the confidence, strength or understanding to do so. It is important that systematic errors are challenged and improved but it is also important that clarity of information and respect are given to those who use services.

I wonder if that same Nursing Director would have been so slow to respond to her own manager? No? Then treat the people who use the services, particularly if they have a complaint with at least enough respect to contact them in the same time frames – even if it’s a matter of updating them with no additional information.

An organisation which is not willing to take or deal with complaints, cannot be a ‘learning organisation’ which is willing to improve.

I don’t have time to identify the issues in all the stories but it is worth reading as a snapshot of some of the care which is being given in hospitals in this country.

Of course there are good stories, and there are fantastic staff. The very first section of the report is based on positive feedback but we cannot ever become defensive about the systems as they exist and must treat each of these experiences as areas of learning. Sometimes it isn’t always about resources, it’s about respect and it’s about listening and responding.

Yes the NHS is wonderful and many of us have personal stories of gratitude, I have many myself, but if there is anything that can be done by any one of us to make things better, we absolutely must.

The main lesson I will take from these stories is to make sure that every interaction is bounded in dignity and respect. Mistakes happen but they can be resolved by listening and learning from those who experience them.

Defensive organisations that won’t encourage criticism are dangerous organisations. These lessons are just as important in all social care organisations as it is in health care.

The saddest thing about these stories is that we have heard similar before. There have been commitments between increasing ‘compassion’ in nursing and care staff but the systems need to become more compassionate too and far more responsive and flexible.

This is a series of awful stories and experiences but they must be learning experiences so that some positive may come amid the extreme pain and grief caused.

What is Choice?

Lansley and Burstow and those in the Department of Health have extolled choice as an aim to strive towards in both health and social care. ‘Choice and Control’ was used as the key phrase as the agenda moved in Adult Social Care and it has been picked up as the NHS and Social Care Bill made it’s way through Parliament. After all, who doesn’t want choice? Who doesn’t want control? The answer is that not everyone is has the capacity or desire to make a number of choices in critical situations . It worked to an extent in social care in so far as those who are able and willing to choose or those who are well equipped with better funding and family advocates are able to choose.  However we have also seen the policy struggle behind in promoting true choice or in fact, any choice to those who are not as able to pick up the mantle themselves nor who have informal social networks to assist in this respect.

Does having ‘choice’ mean seizing control? Are choice and control two parts of the same coin? Does one lead to the other? Perhaps. My concern is with those who are either unable through issues of capacity or illness or unwilling (because – you know – sometimes that’s a real choice to be made too) to actively ‘choose’ the type of care they receive or the way the care is divided into a support plan.

Where we see the ‘managed’ local authority support plans, we see little ‘choice’ and no control. We see the same large agencies with block contracts tied into providing the same packages of care on the same terms that they always did. The promises of more flexibility have evaporated into the ether of local government spending cuts.

I’m not against ‘choice’  but I’m completely against false choice. I’m against the meaning of the word ‘choice’ being warped into something that makes good political capital for the government with no meaning when ‘choice’ has not been extended in any real terms. I’m against lazy use of the word ‘choice’. The government (and that’s the last government as much as this one) seem remarkably fond of it. Funny, that.

I urge anyone who hasn’t read Max Pemberton’s piece in the Telegraph a couple of days ago to take some time to read it. He writes about contract won by Virgin Healthcare to run services in Surrey.  He explains this notion of ‘choice’

. The emphasis on choice was something that was repeated ad nauseam by ministers in an attempt to sugar the bitterest aspects of the Bill. The legislation would provide choice, we were assured. Everyone likes choice, don’t they? And we all nodded in innocent agreement.

I have argued before that in a healthcare setting, choice is a misnomer: all hospitals should provide an excellent level of care because so many people – the old, the infirm – are unable to exercise choice because of geographical or physical limitations. But only now that we can see the shape of the NHS Bill can we truly assess what choice actually means.

And this is the reality as it exists more starkly in health care than in social care.

I chose my local hospital for treatment because it was the only one I could reach within an hour by public transport. The people who live where I live will be making similar ‘choices’. Those with access to cars may make other choices and go to ‘better’ hospitals further away (although I have to emphasis my treatment was great at the local hospital even though it’s ‘ratings’ and ‘feedback’ are poor!). Those who can only access public transport will have less choice.

Similarly, my GP is on the same road as me. I have had gripes. Do I go to another? No, because when I’m sick, I want the nearest surgery. I don’t have time to research the different specialisms and natures of the GPs around me. This would be even more notable if I were in a rural area.

So who is this ‘choice’ for? For the class of people that the politicians pander to. Those who have the means and ability to choose? How can we truly make choice genuine and meaningful in systems which inherently try to blind themselves to the different cultures. attitudes and natures which do discriminate in the way access to choice is made.

Perhaps this is a way to increase equitable services and access to services across health and social care. I have long believed that advocacy may be a solution. Sometimes I walk away from work and realise that the people that I spend time with on a day to day basis are not the people that politicians either speak for or to. That’s why, as a social worker, it’s important for me to remind and nip away at these groups of people who won’t be clamouring for their pens (real or virtual) to engage elected members.

We have left behind a whole swathe of people who have not been able to ‘choose’ are a part of the personalisation agenda. We must push on and the voices will grow louder as others see this happening in healthcare.

Choice is a luxury of the more able. Good universal services for everyone must be the essential bedrock.

The NHS and Social Care Act has passed, but the voices must increase. We who can choose much speak for those who cannot.

Creating a Two Tier NHS

Reports trickled through yesterday that Lansley has slipped a sneaky potential amendment through in the pre-Christmas rush that allows NHS Foundation Trusts to increase potential provisions for private patients from a current average of  2%  to a maximum 49%.  This post on Though Cowards Flinch sharply points out the this is a total income rather than based on the number of beds which is an important distinction.

The details are explained well in this post at NHS Vault which I recommend highly because there is a lot more detail than I’ve garnered. My response is a undoubtably less erudite than both the previous posts but based unapologetically on my gut instincts and experiences of working in and around the NHS.