The measures embodied in the Health and Care Bill are seen as the reversal of Andrew Lansley’s 2012 reforms.  It’s therefore unsurprising that Lord Lansley has had much to say about the Bill, making over twenty speeches on the legislation since it arrived in the Lords.

On the topic of specialised services, he has raised the spectre of the “bad old days” where there were “considerable disparities and consistencies” between services. As Lansley put it, his approach in 2012 aimed to “level-up” services in this area by making sure standards were consistent. Whether or not this was achieved, a number of Lords have joined Lansley in making their concerns known, making this a major subject of debate over the past few months of the Bill’s passage.

But to start with, what actually are specialised services and why do they matter? The term ‘specialised services’ hides the fact that actually, some of the diseases, conditions and treatments covered by this style of commissioning are far from rare, or that this part of the NHS is somehow small.

Specialised Commissioning covers 146 services, from conditions as diverse as blood borne viruses like hepatitis C and HIV, which affect hundreds of thousands of people, to treatment for liver and pancreatic cancers which together kill 15,000 people each year in the UK.  When you run through the list of conditions, you realise how important these services are for the people under their care and why finding the perfect formula to structure these services is both so important, and such a challenge.

On the issue of size, it’s worth noting that specialised services now make up a sixth of the NHS’s budget. In the five years to 2020, its budget rose by an average of 8 per cent per year.

Whilst it is the case that the 2012 reforms helped reduce disparities in the care patients received and their access to specialised expertise, they still clearly exist. For example, the recent GIRFT Rheumatology report said that while the current model for commissioning specialised rheumatology services “is working well in some areas” in others, there has been little change to the informal model which existed before. These services are meant to cover rare and complex diseases like systemic vasculitis which have “a much higher risk of mortality and morbidity than more common conditions”.

Meanwhile, on specialised asthma services, the GIRFT Respiratory report said there is “confusion” with some specialised centres not meeting the required criteria.  Again, getting commissioning right here is vital, given large numbers of asthma deaths are preventable.

Now though, a portion of the budget for specialised services is set to be delegated to Integrated Care Boards (ICBs), the NHS bodies which will commission services for areas covering about 1-2 million people, and it’s envisaged that ICBs will either organise provision as an individual ICB, or with other ICBs.  However, NHS England has said that while ICBs will take on the commissioning of some specialised services, “national standards and access policies” will remain. Other services, such as highly specialised services will remain directly commissioned by NHS England. Still, the changes raise a number of questions: Which services will be delegated?  If keeping national policies in place looks to be the strategy to prevent disparities, what happens when, inevitably, services in one area do not meet the national standards, or the standards in other areas?

Specialised services were subject to a National Audit Office report in 2016. The current reforms seek to address some of the wider concerns in that report. For example, the NAO highlighted that patients felt their care was becoming disjointed between specialised and non-specialised services. In addition, over 70 per cent of Clinical Commissioning Groups surveyed by the NAO supported a more joined up approached to services.

Disjointed care is not just an inconvenience. Research in the US, for example, showed that lupus patients with more fragmented care are more likely to develop serious infections and kidney damage. The barriers uncoordinated care creates can exacerbate inequalities as patients have to fight the system to get the care they need. Giving responsibility for specialised services to ICBs, could ensure more coordination, with a ‘bottom-up’ commissioning structure meaning specialised services are more integrated into secondary care and commissioning decisions are made more precisely on local need.

Another of the NAO’s recommendations was for NHS England to develop an overarching strategy and “communicate this clearly to stakeholders”. The number of Lords raising concerns about specialised services in recent weeks is a sign it has not yet succeeded in doing this. For example, Baroness Neuberger, who is also chair of University College London Hospitals Foundation Trust – a major specialised provider (and therefore a major stakeholder) – warned that delegating responsibility “where there is no evidence base for joining up pathways” will lead to more fragmentation and increased costs.

The diseases covered by specialised services include conditions where outcomes have historically failed to improve, like pancreatic cancer, or where current standard treatments remain inadequate. Wonkish discussion of ‘specialised commissioning’, hides the very real consequences that getting this aspect of NHS reforms wrong would have for some of those patients in the most need.