Humber Acute Services Programme - Neurology Workshops

We Asked

In early 2019 a number of focus groups took place across the Humber to hear from patients accessing neurology services. This also included three listening events hosted in partnership with the MS Society. 

Participants were encouraged to share from their experience, what is working well and what is not working well within neurology departments in the Humber area. They were also challenged to come up with suggestions for how care could be improved for patients in the future as well as solutions on how to address some of the current challenges within the services, such as workforce shortages and performance issues.  

In total 129 people took part. The findings of the report is available here. 

You Said

What's Good when accessing neurology services in the Humber?
You told us that the service is responsive and able to adapt to a patients changing needs.
One positive aspect that was highlighted by a number of the patients who contributed to  discussions about neurology services was the way in which services responded to their changing needs. For example, clinicians arranged home visits if needed or followed up with a letter or  summary email to ensure the individual didn’t forget important information. 

You told us that the neurology service provides high quality care
A number of services and individual clinicians were praised for the excellent service that they provide.

You told us that you liked how neurology services provided multidisciplinary care (when different services work well together)
A number of participants highlighted the way in which neurology services worked with a broad range of other health and care professionals to provide holistic support.

What needs to change within neurology services in the Humber?
You said that ineffective communication is having a negative impact on your patient experience and needs to be addressed
Communication challenges and some gaps that still exist between different parts of the health and care system are impacting on some patients’ experiences of care. Examples provided included how nobody gets back to you when you contact them and personal details are sometimes not updated on the system so letters get lost and appointments missed. 

You said that delays and/or lack of capacity is a concern and needs improving
Waiting times and lack of capacity were also raised as concerns. Some examples provided included ling waiting times, lack of beds and procedures being cancelled numerous times resulting in a deterioration in health, :

You told us that there can sometimes be access issues depending on where you live
Where an individual lives in one Local Atuhority area but is registered with a GP in a different Clinical Commissioning Group area, they often come up against difficulties accessing services, even when they are recommended by their acute clinicians. 

Your ideas for change and improving services
You would like a single point of contact with a specialist clinician for advice and guidance without having to go through your GP first. 
You would like to have access to advice and guidance when needed with a specialist clinician, rather than having to wait what can be a long time for a check up appointment. You think this would help you manage your condition better and mean appointments can be retained for those patients who really need to see a clinician.

You would like to see digital solutions used better in delivering outpatient and follow-up care
You suggested making better use of IT and digital solutions to deliver outpatient care, examples included using Skype to offer video outpatient appointments as the clinician could still measure balance remotely, and a central care plan held digitally that GPs, hospital staff and patients can access and update.

You would like us to make better use of the workforce
Many participants made suggestions about how to make best use of the specialist workforce within neurology. Suggestions included; offer group clinics for advice and guidance which would also help build peer support; separate planned and urgent care to reduce cancellations of planned procedures; use healthcare assistants to do more home visits to help prioritise the consultants time for those who need it most; and enable and educate patients on how to self-care to reduce avoidable A&E admissions.

You would like more holistic support for your broader needs 
Some participants told us that their lives would be better if they could access a broader range of wellbeing services more easily. Some examples provided included more hands-on physiotherapy, more accessible local leisure centres with additional disabled parking and better mental health support for both patients and carers. 

You would like access to be more equitable
Some participants want to see equity of service, for example why do some patients go to Hull and others to Grimsby? You would also like more flexibility over appointment times, home visits when too ill to travel and clinics all in one place and time to reduce travelling.

The things you don't want to see change
You don't want the quality of services provided changed or diluted
You said that you would not want to see a reduction in staff or services, especially the MS nurses in Grimsby and Scunthorpe.

You would like how you access neurology services to stay as they are 
You said that you want to keep home visits in place for those who need them and also that you like being able to ring and leave messages as they are responded to quickly. 

We Did

How we have developed Neurology services across the Humber
Humber-wide Neurology Service (launching October 2021)
Developing a single service responds to those areas where patients told us we needed improve – like increasing capacity, having equal access to services for all patients and improving communication.

By working together as a single service, we will be a stronger team and be able to provide a better and fairer neurology service for all patients across the region.

Staff from across both hospital trusts will work as a single team with consistent policies and procedures and doctors will be able to request tests from any site where they see patients, with the exception of some specialist tests which can only be conducted at Hull.

Patients will be assessed more quickly and directed to the right specialist clinician straight away – rather than having an initial general assessment and then being referred to a specialist neurologist (where required).

Specialist clinics and services will continue to be run in Hull (as the Specialist Tertiary Neurosciences Centre), but the new approach will shorten waiting times for individual patients, particularly those in Northern Lincolnshire, and will ensure all patients have the same access to specialist care.

Having a single service will also create more capacity by having a more streamlined service, so we can see more patients and help reduce waiting lists overall

To read more about how your voice is making a difference to neurology services in the Humber, please click here to read our 'you said, we did, we will' feedback report