Rights, Choices and “Free” Healthcare

Today I took part in a really fascinating hypothetical discussion forum with women from across North Lancashire. We looked together at the “right” of choosing to have a Cesarean Section instead of a vaginal birth when there is no clinical indication at all to have one. We also discussed the “right” of having a home birth against the advice of clinicians and current, sound clinical guidance. Unsurprisingly it sparked some good debate but it is this kind of conversation and indeed much wider ones that are vital if we’re going to continue having a National Health Service in the UK that is accessible to all, safe in its provision of care and sustainable for the future.

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ukhumanrightsblog.com

The human rights agenda, if we are not careful, becomes a platform for each of us to act in a way that leaves no regard for the impact of our decisions on the ‘other’ (be that professionals involved in our care, or other people who will now have less choice available to them due to decisions we have made). But we must differentiate between choice and rights as they are not the same thing. In maternity services, a woman has the right to excellent maternity care in which she makes shared decisions with her midwife and obstetrician. However, does a woman have the “right” to demand care which is way outside of what is clinically safe, or to demand a much more expensive treatment option when there is a lack of evidence that she truly needs it, especially when resources are limited? Tough questions! The truth is, she does , of course, have that right. But a more difficult question is whether or not it is then within the gift of the NHS to then provide that kind of care.

So, for example within maternity, let’s take home birth. Two of my 3 children were born at home and it was a beautiful experience (says the man). It is really important that this choice is offered as widely as possible on the NHS. However, there are certain situations in which a home birth becomes extremely risky to the mother and unborn child and the clinical evidence really backs this up (see NICE guidance). So, as an example, a woman who hasimgres previously given birth and had a massive haemorrhage afterwards and in a subsequent pregnancy has gestational diabetes, obesity and a twin pregnancy would not be advised to give birth at home. For the best outcome of a healthy mum and baby the evidence would suggest that this birth would be better under closer supervision than can happen at home. However, what if she takes all this information in and still demands a home birth as her “right”? Well, currently, she would come to a shared care agreement with her midwife and obstetrician, come to an understanding of all the risks involved and have a home birth. And there is a huge part of me, as a feminist, that loves this. It is her own body and her own baby and she can make informed choices. But the cost implication of the time and resource taken from what is an understaffed and overworked midwifery service might then mean that very few other home births can happen in the week or two surrounding her due date and puts the clinicians under significant stress. So, the woman makes the choice to hold onto her “right”, but the impact on others is that their choices are now more limited.

So too with Cesarean Sections on demand. I understand the fear of some women about going through labour and various other reasons for choosing a section. The conversation is not about removing the choice for those who really need it, but the current rates of 25-27% of all births through C. Section is not sustainable in the long-term (nor is it supported by the Midwifery 2020 document). The NICE guidance has been interpreted very liberally by some obstetricians who do not want the hassle of saying ‘no’ and commissioners have in some places not been clear enough about what their own guidance is. But, vaginal birth is natural and safe and perhaps we need to see it as the norm for every woman unless there is a clear clinical reason (be that physical or psychological) as to why that can’t occur.

The tough question facing those who commission services for the NHS is whether or not choices should become more limited in certain situations so that the gift of the NHS can continue to be sustainable in the future for all. If choices were limited in order to protect everyone’s rights to free and excellent maternal care, it is not that women could not then go against guidance, but they may either have to go through an appeal panel or pay for the kind of care they want themselves……ouch (especially as this won’t be equitable for all).

Much of this comes down to good communication skills. I have been really heartened to imgresspend some time with AQuA (Advancing Quality Alliance), who are helping clinicians learn how to use better consultation skills to really share decision making with patients. It is based on a model of care which we use a lot in General Practice called “Calgary-Cambridge” (more on this another time). But it is vital that clinicians communicate choices better and come to shared decisions with their patients, so that they understand the impact of their choices both on themselves and their loved ones, but also on the system itself and therefore other people. We cannot have a situation where people can simply demand whatever they want without any thought of the implications and so good information sharing is vital. Equally, we cannot continue with patients being forced down one path of treatment or not understanding the choices available to them due to poor communication or a lack of humility on the part of the clinician. The clinical-patient relationship is a partnership.

If we are going to develop a new love-based politics, our own “rights” must also take into account the needs and rights of others.

Complex Very Complex

A brilliant midwife, whom I hugely respect, posted this link on her Facebook page recently (if you don’t have time to read it, it details how North Wales is going to lose its special care baby units, so babies needing such care will be transferred over to England):

http://www.dailypost.co.uk/news/health/baby-care-shake-up-more-north-6720586

When we lose local services it causes a sense of anger and disempowerment. What about not being able to give birth in your local area, if you have a complex pregnancy? What if a mum’s baby is taken miles away from her for special care, only hours after having a caesarian section and it is a few days before they are reunited? What is the impact of this on the mental health of the mum and child? What about partners who can’t afford to keep travelling 40-50 miles to visit mum and baby and have to look after the other kids? What about the loss of jobs to the local economy and the sense of belonging that having things available in the local community can bring? What about the dangers of being transported to somewhere so far away to receive specialist care? It seems like a dreadful and unloving thing to close local services.

Sadly, it’s not that straightforward…. I thought it was, until I became the lead clinician for maternity for Lancashire North CCG. When looking to provide services for an area we have  a backdrop of three key factors to consider: 1) Safety, 2) Affordability, 3) Accessibility.

1) Safety: Research suggests that survival rates of babies with complex needs are higher in specialist tertiary centres, which deal with such problems far more commonly. Travel times from studies seem comparatively safe. Women, who have complex pregnancies have better outcomes in more specialist environments. The equipment is better, staff are more specifically trained and due to seeing and dealing with very poorly babies and mums more often, the care is better and survival is higher. Currently, the UK has some of the worst maternity and neonatal data in Europe and there is a hope to change this. I am grateful that none of my children needed this kind of care when they were born. I was also grateful, that if they had, I happened to live in Manchester where there is some of the best care available in the UK. But there is a difficult question for those who live more rurally (as I now do). If your pregnancy is complicated and you need more specialist obstetric input, or your baby needs highly specialised care, do you want that care to happen locally with a team who may not have lots of experience in that specific situation, or would you rather be transferred, potentially some distance, but be able to receive more expert care and have better long term health outcomes?

2) Affordability: Currently in the UK, the litigation budget for maternity and neonatal care takes well over 40% of this whole budget area. They are also hugely expensive specialities. We would all love to have highly specialist units on our doorstep or at least fairly local. But we have to face to some difficult facts that we have a lot of hospitals in the UK, which are extremely expensive to run and we can’t afford them all to be specialist centres for everything….We don’t have the staffing levels needed for this and with the way we currently do economics and due to our strong culture of blame and litigation when things go wrong, we don’t have the money. We have also hugely over-medicalised birth as a process. The Midwifery 2020 document implores us to help birth become a more natural process again, to take out too much over involvement and encourage (more affordable) midwifery led units and home births…..We could also train our midwives and health visitors (and even surgeons) to higher levels of expertise, as they have done in Scotland…..Complex cases could then be handled in larger regional centres…..

3) So, when we talk about accessibility (and for me this is especially important for the marginalised poor and for those for whom mobility is a real issue), we have to have that discussion in the light of safety and affordability. We also need to factor into our budgets the need to help those who can’t afford travel and child care…..

This doesn’t stop with maternity and neonates. Only yesterday we have also seen the Health Secretary, Jeremy Hunt, decide to close large parts of Mid Staffordshire Hospital and redistribute services elsewhere, after the recent scandal involving substandard care. We are seeing ED’s closing and will see many more such ‘reorganisations’ happening.

I believe that leadership can be self-emptying and loving and sometimes hard medicine does not always feel like love. Personally, however, I feel that the way Mr Hunt acted was neither self-emptying or loving but rather dictatorial, bullish and driven by a very different ideological objective.

We do have some significant challenges ahead and there are some changes to our systems that are necessary in order to provide the most excellent and loving care. It will take some serious re-imagination and the breaking down of some current mindsets we hold.

Not that my opinion really counts for that much, but for what it’s worth, some of my ideas would be as follows:

I really believe in participatory economics (sounds fun, eh?!). There has been a lot of rhetoric about devolving of budgets and allowing local health boards to make decisions about how money is spent. Firstly this isn’t really happening, as any time a decision is made on something the ‘powers that be’ don’t like, they come and crush the idea and tell the boards what to do instead, with the threat that they will replace the board if they don’t comply! Secondly, it doesn’t go anywhere near far enough and it lacks integrity because there is no joined up thinking. If local people are going to make decisions about their local economy, then it must be the whole and not just a part. Currently we spend an enormous amount of money on treating disease (or preventing it through vaccinations), but nowhere near enough on promoting health in our communities. Isolated budgeting doesn’t work and we waste an enormous amount of time and resource. We know that maternity care and neonatal care are being made so much more complex by our astronomically rising rates of obesity and diabetes, but we’re not putting the money into the places that could help turn this tide. We are also not collaborating between areas like health and education but are rather putting them in competition with one another, which is genuinely crazy. So, if the people of North Wales want an amazing special care baby unit near by, which provides brilliant care, they could decide to do so, but there are cost implications on other services, and cost implications on keeping up the expertise of staff and giving them enough time and exposure to complicated scenarios to know how to handle them efficiently…..So, less learned helplessness, and more engagement…..

Within that, we need to watch out for selfishness and all wanting our own rights. For me there would need to be priority care for children, women, the marginalised poor (especially including destitute asylum seekers), prisoners, the elderly and the mentally ill.

I also believe in gift economics. Towns and cities within a region can gift things to one another. This is already happening in healthcare and could happen more and in many other fields. For example, in North Lancashire, Blackpool has a gift of cardiology and cardiac surgery. It is a regional centre of excellence. There was initial resistance and concern about losing and moving local services but survival outcomes after heart attacks and many other conditions, both in terms of mortality and morbidity (how well you are afterwards) are far better across the region. Preston has a gift of neurology and neurosurgery and again provide excellent care. We don’t all need to have everything. Learning how to work in partnership and collaboration is key.

We need less of a blame culture. We need more compassion and understanding when things go wrong. Even if all the complex care is put into regional specialist centres, things will sadly still go wrong at times, mums and babies will still be poorly and die sometimes and nothing will change this……so some would ask, is all the reorganisation therefore worthwhile?

The redesign of our current systems is necessary and complicated. Sometimes, in the face of the economic beast and within the suffocating nation state environment, we can feel hopeless of change and helpless in our learnt disempowerment. Foucault says that we’re not really disempowered…..we just think we are. Revolution doesn’t have to be violent and bloody. Revolution can occur when enough people chose to engage, to love and to become the change they want to see…..

In the mean time, my plea would be this. Let those who are making tough decisions do so out of love and goodness, and not look to make healthcare profitable for private company share holders. Secondly, let those who don’t make decisions be kind to those who do….