Supporting the Every Breath campaign - calling for Motor Neurone Disease respiratory care in Sussex

In April I contacted the Central Sussex and East Surrey Commissioning Alliance about Motor Neurone Disease (MND) respiratory care in the region, and the need for a non-invasive ventilation (NIV) service locally.

At present people living with MND are told that they have to travel to the Lane Fox Unit (LFU) in London for respiratory assessments and ongoing care. Given the desperately devastating impact of MND - a terminal and degenerative disease - making a round trip of approximately 140 miles is completely unreasonable, and for many, simply not possible. Figures suggest that around a quarter of Sussex MND patients declined a referral to the LFU in January 2018.

The need for a NIV in Sussex has been recognised, and a service was commissioned in 2015. Yet things have stalled, and three years on they do not appear to be any further forward. Having received an initial response from the Commissioning Alliance, I’ve gone back to ask more questions about the delay, and to try and unpick why things have stalled, and to stress the urgency for the situation to be resolved.

The MND Association’s ‘Every Breath’ campaign is calling for the locally commissioned and provided NIV service to commence as originally commissioned, or an urgent interim arrangement for a domiciliary respiratory care to be developed without delay. I support this call, the current arrangements deny many people with MND in Sussex access to vital assessments and care – it’s an unacceptable situation that cannot be allowed to continue.

My correspondence with the Commissioning Alliance is copied below.


From: Brighton Office
Sent: Thursday, April 19, 2018 16:51
Subject: Respiratory care for people with Motor Neurone Disease - campaign


Dear Adam,


I am writing to you to make you aware of growing concerns regarding a gap in respiratory care provision in the pan-Sussex area. This has been brought to my attention via my constituent who has personal experience of Motor Neurone Disease, and is a member of an active volunteer community supporting those with this terminal, and degenerative disease in Brighton Pavilion, and the wider Sussex area.


It is my understanding that in 2015 a service specification for a pan-Sussex non-invasive ventilation (NIV) service was created, with input from a Motor Neurone Disease Association Regional Care Development Adviser (RCDA), and MND specialist practitioners.


The contract was tendered and then awarded on 20th October 2015 for a three-year term (with the possibility of extension) to Brighton and Sussex University Hospitals NHS Trust, East Sussex Healthcare NHS Trust and Western Sussex Hospitals NHS Trust. I believe that the lead Clinical Commissioning Group (CCG) named for the delivery of this contract is Hastings and Rother and the anticipated contract start date was scheduled as November 2015.


At the time of writing, my understanding is that the commissioned service for non-invasive ventilation is still not in place. My constituent has contacted me because she is extremely concerned regarding the sixteen-month gap in locally commissioned and provided domiciliary respiratory services that has ensued for patients living with MND in Sussex.


As an interim measure, people living with MND in Sussex are being asked to travel to the Lane Fox Unit (LFU) in London for respiratory assessments and ongoing care. A number of people living with MND who are supported by the Association, have shared their personal experiences of the negative impact on their health and wellbeing as a result of accessing this geographically removed care. One patient has had to undertake four trips from West Sussex to the LFU (London) in as many months, and in January 2018 23% of the current population of people living with MND in Sussex declined referral to the LFU.


The MND Association Regional Care Development Adviser (RCDA), and Sussex MND Care and Research Network Coordinator are passionate about resolving this issue for the patients and family members they support, and I am aware that they have extended an ongoing offer to work with Hastings and Rother CCG to help secure the delivery of a Sussex-based service.


In light of the ongoing gap in provision and inadequacy of current interim measures, I would like to seek assurance from Hastings and Rother CCG on behalf of my constituent, and the those affected by MND that the service will commence as originally commissioned, or an urgent interim alternative arrangement for a local domiciliary service be developed with the current provider. I would also be grateful if you can confirm when you anticipate that this service as commissioned, or an alternative interim solution, will begin. Please would you provide me with an update regarding the current position, and the discussion taking place locally about this gap in provision?



Many thanks,





Dear Adam,


Many thanks for getting back to me with more information about the current position with the tender stalling. Whilst it's encouraging to know that the need for a non-invasive Ventilation service locally is recognised, by the fact that a contract was tendered, it's obviously disappointing that things seem to have stalled for such a long time.


I would welcome the update that you mention in your reply once information is available. However, I am a little concerned that the negotiations to date are so slow moving, and that a number of years on there are still question marks about whether a local service will get off the ground at all. I'm further concerned that the CCGs have agreed three options, including continuing to pay for patients to seek care in London. This does not address the problems raised in the 'Every Breath' briefing regarding the distance those living with MND are being expected to travel to access respiratory assessment, monitoring, and ongoing care.


In the briefing, Professor Nigel Leigh, Professor of Neurology at Brighton and Sussex medical school, makes clear the reason why geographically removed care is unacceptable for MND patients:


‘Non-Invasive Ventilation (NIV) is a life-saving, life-prolonging, and quality of life-improving treatment for people with MND. All people with MND can potentially be helped by NIV and the NICE Guidelines make it clear that this not an optional intervention- it must be considered and discussed in every case.


Providing NIV requires a local service as many of our patients are elderly, frail, and have severe disabilities. For many (certainly 50%- perhaps more) a long journey to central London to visit The Lane Fox Unit (LFU) is a daunting and indeed impractical prospect. 


Because the LFU are unable to provide a local outreach service, these patients are effectively condemned to distressful symptoms and to an early and avoidable death.’


Please would you provide some reassurance that negotiations are active, and that an update on the situation will be provided within a reasonable timeframe - eg weeks rather than months? I would also like more information about the reason for the tender stalling, please would you confirm the following:


 - what was the original agreed cost

 - what do the three Trusts say they now need to deliver the service effectively

 - is cost the only barrier to the service progressing and being established


As you will of course be aware, MND is a devastating for those it affects, and Professor Leigh makes very clear the impact of not being able to access a more local service. The constituent who initially contacted me cannot stress enough the need for this to be resolved, and the inadequacy of the current provision - where those with terminal and degenerative diseases are having to access respiratory assessment and care many miles away (a 140 mile round trip by car).


I look forward to your further reply on this.


Many thanks,


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