New Specification for Adult Neurology Services - Rich's View

Yesterday, NHS England published a new service specification for Adult Neurology Services. Our Chief Executive, Rich Collins, fed back into the original consultation on behalf of the Inflammatory Neuropathies community back in January this year. He wanted to give an update on the final specification, and what it means for our community. We should point out that this specification is for England only, and what happens in Wales, Scotland, and Northern Ireland will likely be different. You can read all the related documents at NHS England » Specialised neurology services (adults) 

"We haven’t had an update to the service specification for Neurology services for a decade, so this work was well overdue. A specification is really important as it lays out what we should all expect from the services we receive, and how they should be designed, run, and implemented. It is a key part of the contracts and commissioning arrangements within the NHS, so it is a big deal what goes in.  The new specification outlines how services should come together through ‘Integrated Neurology Systems’. Its another fancy term, but basically it means that where there isn’t a specialist neurology centre in your area, then the NHS Trusts that operate these centres and hospitals, need to have an arrangement in place to work together so people from an area without a specialist centre, can access one in a neighbouring area. This should mean that you can receive the support you need, as near to home as possible, but access specialist care and input when you really need it, something that is really important to people impacted by Inflammatory Neuropathies.  The new specification outlines new standards expected of services, and these should bring more consistency to how everyone receives neurology services, reducing inequalities based around where you live. It also lays out a number of minimum services expected for specialist areas, including for Neuromuscular Disorders (which includes Inflammatory Neuropathies). These lay out what people should expect from their service including: 

• Access to neurologists who can diagnose and explain neuromuscular disorders, initiate treatment and signpost to support and services 

• Access to basic investigations that might be needed as part of the diagnostic process  

• Pathways to access advice from specialist regional neuromuscular services  

• Access to local MDTs with community services 

• Have specialist diagnostic and treatment services in place for peripheral nerve diseases 

• Provide follow-up review with an MDT member at clinically-appropriate intervals (or patient-initiated follow up) for people with progressive neuromuscular conditions 

• Have mechanisms in place for rapid review during periods of disease instability (e.g. for chronic inflammatory demyelinating polyradiculoneuropathy)  

• Ensure availability of a specialist MDT, including: neurologist, specialist nurse, dietitian, physiotherapist, occupational therapist, speech & language therapist, and respiratory physiologist 

• Provide access to Neuropsychiatry and Neuropsychology where required 
  

So, that is a lot of information, but what should it mean for people impacted by an Inflammatory Neuropathy. Well, basically it should make things better. It should mean that the services outlined above are available to everyone, and that access to services is improved. It also means that we should all know what to expect, and make it easier to understand our care pathways. 

But, there are a number of issues with all this. The organisation's who will need to make this happen are currently all destined for restructuring. The service commissioners responsible for this are NHS England (NHSE) and more locally Integrated Care Boards (ICBs). Both NHSE and ICBs are due to be restructured with significant downsizing of staff and capability, just as they are needed to make this happen. On top of this, the Trusts that provide the services are under pressure to perform more and spend less, a difficult balance to meet. This will make it difficult to achieve. 

What do I think of the specification. In general, it’s pretty good and should be applauded for its progress and how inclusive it is for a document that covers such a wide range of conditions. Does it have flaws, yes. Most notably it is full of the word ‘should’ rather than ‘must’ or ‘will’. As someone who used to write these documents, this is very dangerous as a provider could just say ‘well we should have done it, but….’ This was something that was fed back within the consultation, but hasn’t changed. My worry is that this could cause issues around how services under this specification will be commissioned, managed, and monitored. 

It does look like other aspects of the consultation were listened to, and things like the Equality Impact Assessment are very good, ensuring that the specification is inclusive and is fair. 

In summary, this specification is much welcomed by me, and by Inflammatory Neuropathies UK. The real question will be how it is delivered, and how effective it is. We will of course work with NHS England, and with other community organisations and partners to support implementation, but we will also be watching to make sure that both the specification, and the NHS deliver on this specification for the Inflammatory Neuropathies community."