Review of Neurology Services - Workshop

Agenda

Improving Neurology Services in NI Workshop
02 July 2019 - 11.00am – 3.00pm
Grosvenor Hall, Belfast

Time	Session
11.00*	Welcome, Outline of the day
11.05 – 11.20	The Regional Review of Neurology Services
11.20 – 11.30	A brief introduction to Coproduction
11.30 – 12.10	Table-based discussion a) What is important to you as a neurology service user? b) What do you think are the hallmarks of a quality service? c) Thinking about services currently, what bug-bears do you have?
12.10-12.30	Feedback
12.30 -13.15	Lunch
13.15-13.40	Setting the scene: How can we improve the coordination of care for neurology patients?
13.40-14.20	Table-based discussion a) What do you want from a new care coordination/navigation model? b) What are the key features of effective coordination?
14.20 – 14.45	Feedback
14.45 – 15.00	Next steps
15.00	Close

Table-based discussion

Question 1 - What is important to you as a neurology service user?

Table No.	Feedback
1	Timely access – don’t feel need for specific consultation but at time of need – “see on symptoms”. Balance with review and monitoring and MDT. Current process with GP ineffective; Can’t access nurses and helpline. Email access cut away – having this access is useful, efficient and solves problems earlier; Knowledge of/education regarding conditions. Newly diagnosed courses, referral to reputable organisations and information (credible); Access to emotional and psychological referral.
2	Right care right place right time; Postcode lottery – where you live shouldn’t affect the type or quality of service; Local service as far as possible; Navigation – need to be supported to know what services are available; Emotional support – raised again through recall; Genetics risks for wider family.
3	Being made aware of services available; General neurologist too general – need specialists in particular conditions to get the treatment right; Links to mental health need to be right and at right time; Emotional support very important; Partnership working very important; Support for volunteers; Recognition of how traumatic a diagnosis can be for person and carers; Fatigue is a big issue for many; Joined up working –right support from NHS and charity sector; Resources – getting access to right people and services; Communication – too many answer machines.
4/5	Accessible services when you need them and at the right time; Physical accessibility – car parking, physically getting into the venue, access to toilets; Appointments – getting one when you need it (waiting lists), not having to prompt, and scheduling (reflecting travel requirements); More important to get expert care; Understanding where your care should be and that its organised; Proactive services, not having to shout; Continuity of care for different Consultants – having to repeat your story every time; Good quality information.
6	Joined up approach; Information – information Hub (e.g. Ulster hospital drop-in Macmillan model), communication issues, person to engage; Keyworker; Regional approach to address barriers to access; Access to MDT when needed; Service user and carer feedback; Learning from other disciplines; Recognise that lifelong conditions need lifelong care.
7	Shouldn’t have to fight for services (unavailable, long waiting lists, postcode lottery); Knowing what services are available; Follow up care – needs to be signposted, Need consistency of information. More information needed on side effects of medication; Listen to carers as experts in their condition; Services should be fully accessible; Improve time for diagnosis; Accountability; Access to all medications. Repurposing of drugs becomes common place.
8	To be listened to and not being passed from pillar to post; GPs don’t know enough about side effects of medication; Not enough nurses to help with patients; Who to contact for information – neurologists or nurses? More communication between neurologists and other physicians; Good relationship between doctor and patient; Reports need to be shared more quickly between professionals; Talk in words that everyone can understand; Prescribed medication; Help for carers/aftercare.

Question 2 - What do you think are the hallmarks of a quality service?

Table No.	Feedback
1	Offer of telephone/ in person/online to address waiting lists; Access to psychological referral on diagnosis; Educational course for newly diagnosed. Possible referral to voluntary sector; People treated as individuals and not numbers.
2	Address geographic gaps; Timely appointments; Responsive to waiting lists for referrals and reviews; Ability for individuals to challenge – same issues over many years, what has changed? Rhetoric vs reality; Address resources, workforce and culture; Build on what works well – create a learning culture.
3	One stop shop; Clear pathway for each condition; Knowing who to ask for help, e.g. key worker; Knowing what is available and what you are entitled to in terms of benefits; A person to link in with other services, e.g. DVA; Specialist knowledge; Link with relevant charity at point of diagnosis; Workforce planning for the future.
4/5	Neurology needs to talk to other services; Specialist/expert as first point of contact; Recipient of care rather than organising our own care; Standardisation – differences between Trusts; Clear, realistic care plan with direction on what this means for me; Regular reviews and appointments; Confidence in your care; Infrastructure/accessibility; Travelling clinics, all in one building; Treatments need to be available in NI; Diagnosis needs to be improved – more points of contact needed.
6	Service support/pathways within model for conditions; Evidence-based; Consistency – intervention – follow up; Rapid access to emergency care; MDT approach; Information and support throughout the journey; Access to services; Advocacy, coproduction; Health AND social care; Family involvement and support
7	Fit for purpose – fully accessible, understandable language; Genuinely co-designed and coproduced. User experience right at the start and at every step. Need to connect to community; Continued feedback; Flexible for patients/service users; Workforce knowledge of condition/willing to learn; Listen to patients and carers; Change attitudes in workforce; Succession planning.
8	Well informed, well-educated and signposted; Specialist nurses supporting patients; Better access to clinics – making it easier to book appointments; Making sure charitable organisations are available all over NI.

Question 3 - Thinking about current services, what bug-bears do you have?

Table No.	Feedback
1	Location of outpatients at Royal from car park. Immediate delay at start of clinic – over booking! Efficiency and processes at clinic blood tests, parking. Poor yearly review by G.P. Can’t access MS Nurse helpline or by email Review time for patients particularly those outside a regular cycle.
2	Hamster wheel approach over many years – want to see real change focused on patient needs. Differences in services one trust to another – why? (Point 2 in item 1). inflexibility of services – especially patients needing to travel regionally Access to AHP e.g. access to physiotherapy when needed not 6-12 months later – practical & effective treatment at the time required. Communications across the service – joined up approach needed. GP Neurology – MTD teams Hospital – Community – Hospital. Reinforce Key Worker role Lack of professional knowledge about disease specific conditions with – acknowledgement of role of carers & families in enhancing that education. Follow on after care services e.g. Headway Good to have one stop shop – MTD Physio/OT/Neurology Care Advisers all at the time of appointment. Resilience – No slack in Service e.g. Sickness Specialist Nurses and replacement.
3/4	Co-production – Really? – Paper out yesterday – last minute full of Jargon? No acknowledgement of registering for event Organisation name wrong on badges Information on events need to be more timely Need to provide out-of-pocket expenses for volunteers Differences – one person able to get out Smart Pass when they were told they couldn’t drive but not the case for all Biggest issue - time delays as we try to get to the right specialist. Time lapse – one person 7 years with general neurologist but once within specialist significant improvement in care. Specialist had bigger, better tool box. We need to find a way to short circuit to diagnosis of specific neurologist. Referral process needs to be speedier. Bub Bears – you have diagnosis but not signposted to right charitable/support group. Neurological referral adviser service doesn’t seem to be resulting in referral to Charity Sector. More access to services in local Clinics IT System in place that flags it up, this person hasn’t been referred to say Physio in two years putting in alerts. Getting the right signposting – only one Neuro-physio in my area – she went on Maternity Leave – back at square one. I only get the services I need in hospital Community Support, not there always. If in hospital services more accessible but surely you should be keeping us out of hospital Services seem to be very focussed on Belfast.
5	Long waiting lists – not seeing a consultant – getting worse Transition from children to adult services & equality of services Venues services not accessible, unable to get in (facilities) Lack of co-ordination No continuity of care Stop being pigeon holed in Trust areas – needs to be NI wide Treatments e.g. DBS had to travel to England Lack of information Understand my consultant, e.g. Neurologist or Care of the Elderly?
6	Internal gatekeeping – Dual condition needs integration Emotions/Psychology/Social Wider context of condition impact versus AHP /Family or individual need Long term will change – Life Long Neurology & Psychology working dualistically all disciplines
7	BREXIT i.e. Live in Newry can’t get Prescription Dundalk as 92% of drugs imported 1. Listening – experiences not taken seriously “It’s only a faint” 2. Waiting lists – difference between private and public – Reg/Red? Flag deteriorate on the waiting lists – re-conditioning. 3. Pathways – Need really clear information 4. Need advocacy – Patients can feel frail – need a voice. 5. Consistency of care – reviews need to be regular to manage conditions 6. Access to MDT 7. Option to change Health Professional if not confident in their care. 8. Access to medication e.g. child with epilepsy going on holiday – not able to get medication – locum GP needs to improve in Primary Care. 9. Consistency of seeing doctors – someone who will care and will listen 10. Continually evolve – connect to service users – new treatments worldwide.
8	Contacting anyone and getting nowhere Waiting list for seeing a neurologist Not enough consultants, nurse, specialised staff Mental health support ( or other treatment required) due to isolation due to chronic illness

Question 4 - What do you want from a new care coordination/navigation model?

Table No.	Feedback
1	Defined and better relationships between Health Services and Charities Care co-ordinators in Ophthalmology highlighted as positive example A Hub which creates a team, respected across the Health Service which co-ordinates and referral processes A systematic approach to secondment of care advisers to charities to gain expertise or in Hub setting could have a special interest.
2	Speedy access crisis points – When patient needs help particularly at weekend Single point of contact, single named Specialist, in each Trust area Care should be provided by clearly defined MD Team – Hub. Access is required to a wider clearly mapped network of services Co-ordination vs navigation Engagement/support of family members/carers Meaningful Engagement acknowledgement – Funding investment of Charitable organisations to achieve the partnership approaches – with a view also of a shared skill approach 24/7 approach and provision of service Inclusion of care co-ordination for those discharged from service but living with neurological condition. E.g. Anna situation no aftercare services Relevant use of technology e.g. app with consistent approach across Northern Ireland – all Trusts
3	Neurologist expertise - Navigator for sign posting role Doing role: Key Worker/co-ordinator: Specialist conditions PD, MS, Rare conditions Hands on – specialist knowledge. Feed into Charity Groups working relationships Concerns around Pathway HUB is key – save money in long term Concerns around IT portal – not suitable for all Concerns around Key worker role – Medical/other? We require further information around those roles Key worker & other specialisms needs to be centred for this model to work HUB would be better – Physical or mixture of both – Think HUB good
4/5	Care Advisor role – This is more like consultation not co-production Is the money going to be there? Care advisers in the middle funded efficiently? Same thing being discussed No one at the table knew about the service and didn’t fully understand what the role does What is the hub? Is it a building, is it a physical building, does everyone have their own hub? Not MDT enough Easy accessed & easily used Ambulance service included & Social Workers provide great support Virtual suits some but not everyone – needs physical space Don’t feel Care Advisers are best way to implement model Needs to be a higher BAND e.g. Grade 6 as in England Feels the most important point is the stage at diagnosis & needing support to process whether then or later, the right time for them Needs something for those who are waiting diagnosis, specifically rare disease – some will never get diagnosis Care plans, pathways, etc. are helpful – how & who delivers? Who is going to review the care plan & pathway? Elements are strong, more work needed on this – Tailored – one size doesn’t fit all Swift Implementation
6	Consistency, joined-up Clinical wards should have access to provisions of facilities of wheelchairs/changing facilities Sensory considerations Empathy and understanding of Service User/condition. Fast Track Model Patient Passport that is updated at point of entry. Technology assistance, literature and information A&E Triaged to HUB, onward referral Therapy services - need for residential respite maintenance of care and continuity Learning from NHSCT Pharmacy review & assessment with follow up Gatekeepers of service! Plan – do – review (Accountability) (Ongoing) Education/training as CPD on conditions across Neurology = PCC Learned approaches from EU, USA, UK. Counselling, Psychology, Psychiatry Health & Social Care
7	We are being short changed in Neurology – can’t be lone workers needs proper resources & robust – can’t be a lottery 1. It needs to exist 2. Accountability – Know your options – clear contact details. Connect to support from point of diagnosis – Results/reports, follow up is co-ordinated instead of DIY Health Service where you have to follow up from reports/results. 3. Clear information Pathway for each condition and a catch all Pathway if there isn’t one – needs to be developed urgently and kept up to date/needs to be another option – flexibility – not just tick box exercise. 4. Must have status with other personalities of Professionals. Can’t just be a sign poster – must have clout! 5. Co-ordinate appropriate care plan! Without having to fight for it system causes horrendous stress and exacerbates illness. 6. Needs to be based in the Community – Community Services need to be available – contact details need to be widely available. 7. Carers need longer visits – 15 minutes not enough. 8. Appropriate care when needed – stop depending on family who need quality time with person. Care co-ordinator pathway work alongside / be part of the MDT – This framework needs to be developed 1. Go to clinics – briefed on who coming, introduce themselves stay with family throughout appointment, carry forward next steps & pick up/follow up 2. Care co-ordinator/keyworker needs to be part of bigger team – we need to know what this is before we design care co-ordinator service Architect - They plan the pathway for each person and get the services in place Educate – We need the workforce developed – How do we attract people to rural areas? Look at pathfinder work All services are vulnerable – no succession planning - DIY Health Service! Need more specialist nurses – are the key – need 14 Parkinson’s Nurses in Northern Ireland.
8	Communication about how to be contacted (Phone, Text, email) Easy access to a secure unit for appointments results etc. Care Team – numerous numbers or contacts (e.g. Cardiac, Diabetic teams, all excellent) APPS for phone To make it faster for patients with other neurological illnesses or degenerative illnesses First port of call for relapse patients – is this flexible? Cover for doctors and nurses on holiday etc. Local Services – Specialist nurses etc. may be available in GP surgeries Maybe make a Hub of specialists in different towns

Question 5 - What are the key features of effective coordination?

Table No.	Feedback
1	Mix of answers for both afternoon questions Immediate access when I need it Happy to use technology where appropriate Criticism of the APP idea – cost, maintenance and redundancy Difference between need for intervention and access to Professional vs information & management through technology. Question marks on access to digital resources and capacity of individuals. The multi-disciplinary Hub is logical idea that should be replicated and improved upon. Exists in an embryonic idea but team should be expanded and completed. Continence nurses to be added to Drs and Nurses, Physios needed too and a range of Holistic experts. Communication and report Professionals to Consultants – Importance of feedback loop and sharing between Directory of Services for Healthcare Professionals – contacts – currently inefficient Need to resource the Hub so it is accessible and timely Discussion on clinics being booked in a Thematic way in relation to symptoms to make efficient use of Professional’s present Expert signposting rather than simple direction
2	Point of contact when needed 24/7 Skills and attributes – personality, tenacity, energy, enthusiasm good listening and responsive service Ensuring are plans in place – Role of co-ordinator or Key worker – Care plan between patient & co-ordinator or plan of case Consistency of approaches Delivering on what is promised Engagement of patient & their advocate carer Clarity no misunderstandings – verbal and written information, other forms and follow up – all specific to individual needs Need for accuracy of data 40,0000 population in care have a Neurology condition Where do you see them – at home, clinic, other What are agreed forms of contact Contact with other professionals/individuals on your behalf Links with charitable and voluntary organisations – niNCA Charity contact details Understanding that this is only one element of a number of issues that need addressed
3	Service users involvement* Care plan all aspects of care “Communication Effectivement” “52 week” Access – key? Hub day time 24 hours Physical Hub were possible – long term saving money Clarity around roles in pathway – higher grade quality service & respect. “Co-ordination role” Review & ongoing evaluation of services. Feedback to service user – portal or through key worker – feedback to service < DoH/working/issues/communication.
4/5	All feel a bit jaded & would like to see results not keep talking More joined up – appreciate MDT Done by someone other than the recipient Person is sufficiently trained and supported User friendly Over stop service Communication pathways Empowering patients Good quality & up to date information Reduced waiting times Education for GPs and other key professionals so they are aware of the service Organised co-ordination not averting to a crisis Innovative Doesn’t deal with the reality Resources being provided Succession planning – training packages – language issue i.e. “relapse” not all patients relapse/?
6	Lifelong ensure accountability Engagement with families, carers, Appointee ship Respite opportunity – appropriate settings Feedback - Gatekeeper - Safeguards and standards – Feedback & evaluation outcomes & measure – Dialogue for change resources effectively used. Co-ordination into Commissioning & planning – user experts. Quality standards – Not always based on public purse. Education & empathy Patient centred – Primary focus on individual – empathy, dignity and respect Publicity and promotion of service delivery Communication (bottom up – true element of co-production Regional basis Hub co-ordinated Belfast P&S Need for emergency care & elective care
7	1. We need to get it done! No more reports! It’s work in progress – get it started and keep progressing 2. Be sensible! Common sense – how many neurologists are specialists? – focus on MS today! 3. We all have potential to develop a neurological condition 4. More awareness of neurology generally 5. Even today all DoH sat at one table – no integration with service users - not listening 6. Need record of true impact of neurology conditions 7. DoH needs to know how many people are living with each condition 8. Get diagnosis off GP lists 9. Need better Data – How are you commissioning services when you don’t have data 10. Need to record co-morbidities so we have a clear picture 11. We need physical & mental well-being to have equal priority 12. Need appropriate pay! Stop depending on Agency – no common sense/ no planning / haemorrhaging money 13. Workforce planning & Education plan – look outside Primary & Secondary Care - go to start – education! 14. Agencies cut is phenomenal! Bank staff 15. Comment “I have less than no confidence that this will be planned right. It is airy fairy, no-one has a clue what it is like to live with neurological condition” 16. No facilities planning. No leadership – need someone to take responsibility!
8	An advocate to be offered to patients on their own at appointments and who may need extra help understanding their condition. Feedback about doctors/nurses on how to improve their interpersonal skills with patients.

Additional input from service users unable to attend:
 Need for advance notice for workshops;
 Concern about access to services in North West;
 Link with benefits and PIP understanding of neurological conditions.

Analysis of feedback by theme

What is important to you as a service user?

Right care:

Proactive services;
Specialist skills;
Multi-disciplinary team;
Emotional/psychological support – link with mental health;
Access to medications but need to understand side effects;
Support for carers.

Right time:

Timely access – getting an appointment when you need one;
Improved diagnosis time;
Follow-up care;
Understand that lifelong conditions may need lifelong support.

Right place:

Physical access;
Local services where possible but regional approach may be needed to address postcode lottery.

Knowledge:

Good quality information;
Education on conditions;
Use of language, explaining terminology;
Keyworker to help raise awareness/understanding of services available.

Joined up-working:

Continuity;
Improved communication between professionals, e.g. sharing of reports.

Governance:

Clear lines of accountability;
Feedback loop for people with neurological conditions and carers.

What do you think are the hallmarks of a quality service?

Service user experience

Services need to recognise people as individuals, not numbers;
Real coproduction - Involved at every step;
Support at point of diagnosis;
Need to have confidence in services;
Accessibility/infrastructure;
Advocacy.

Service development

Evidence-based;
Responsive (appointments and reviews);
Resilient – workforce and resources;
Link with wider services – health and social care, voluntary sector and services provided by other government departments (DVA, PIP etc…);
Clear pathways and care plans;
Address geographic gaps.

Culture

A learning culture – ongoing improvement;
Listening;
Workforce attitudes.

Thinking about services currently, what bug-bears do you have?

Location

Services are focussed on Belfast;
Need to consider impact/scheduling for those travelling to appointments;
Carpark and physical access an issue.

Pathway

Experiences not taken seriously;
Services aren’t responsive;
Lack of aftercare;
Need to speed up referrals;
Diagnosis – lack of knowledge about specific conditions/time delay getting to the right specialist;
Timescales for review;
Difficulty accessing Nursing support and advice;
Support from voluntary sector not always signposted, and not always available in different areas;
Services are inflexible;
Coordination/continuity/consistency;
Different services/support available depending on the Trust;
Access to medication

Change

Need to see evidence of real change;
Services need to continually evolve, reflecting new treatments

What do you want from a new care coordination / navigation model?

Multi-disciplinary Teamwork and communication

Defined and closer relationships between HSC and charities sector, including commissioning of services from the charities and voluntary sector;
A lead Neurology team in each locality, known and respected across other HSC services;
Development of the Care Advisor role similar to Eye Care Liaison Officers;
Secondment of Care Advisors to charities to improve their expertise and training;
Clarity of roles between Coordinator, Advisor, Key Worker, Nurse Specialist etc.;
Resourced to work – not a bolt on to existing staff;
A local and physical hub that brings together the local team.

Access to expertise

Easy access – a single point of contact (includes phone, email, text);
Access for families and carers as important as for the patient;
Those discharged from the service or still awaiting diagnosis should also have access to care coordination;
Care should be provided through a multi-disciplinary team;
MDTs should have access to training;
MDTs should have access to a mapped (recognised) network of services;
Increased emphasis given at the time of diagnosis when most people need support;
Coordinators and key workers need to be part of a bigger team.

Access to information

Capitalise on the use of technology;
Signposting should involve more expertise – staff should have knowledge of specific conditions;
Information provider should know when to differentiate between generic and specialist information/advice;
Easy access to appointment results.

Care plans and pathways

Speedy access to support at crisis points / relapses;
Careful consideration needs given to how and who delivers the care plan;
Care plans will need reviewed regularly – need to agree by whom;
Achieving an effective care plan shouldn’t feel like a struggle;
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Plans should have the full participation of patients and their carers / advocates;
Adequately funded model;
Care plan approach should be regionally consistent;
Hub as an alternative to ED attendance;
Clear pathways for each condition and a generic version when not possible.

What are the key features of effective coordination?

Clear roles and accountability

Coordination should be provided by a single named specialist who has a key role in assisting patients and their families to navigate their journey;
Clear separation between Care Coordinator, Care Advisor and other roles;
Coordinators should have knowledge of the interconnecting nature of symptoms;
Staff looking after patients should be up to date with knowledge, have regular clinical up dates, are aware of care pathways, new treatments, and how to access further advice if needed.

Access when needed

Many diseases are degenerative and timeliness of access should be a priority;
Access to review appointments should be when needed, not pre-planned months in advance;
Could some services be localised e.g. Nurse Specialists attending GP practices?
Access to support should be more than Mon-Fri 9 to 5 if a relapse occurs;
Emotional / psychological support should be given as much priority as physical assistance.

Good communication

Different parts of the service need to communicate e.g. if someone attends ED, their local Hub should be notified;
Communication guidelines should be used to aid operation including early consent to empower professionals to share information;
Healthcare professionals should be able to access shared / common information for a holistic view of a patient’s situation;
GPs and other professionals should be able to access the Neurology hub for advice;
Improve the interpersonal skills of healthcare staff;
Care Advisors and Coordinators should have contact with the charities and voluntary organisations;
The model needs to take account of those with neurodegenerative conditions (compared with general neurology) as they have specific limitations with speech, mobility and inability to write.

Defined organisation and structure

Arrangements should be consistent across NI;
There should be a Neurology Hub at each Trust and composed of a multi-disciplinary membership;
Needs to be properly resourced to work;
Care Advisors need to be part of a bigger team;
The Neurology Hub should be a physical entity – not relying on virtual membership;
Use of technology where appropriate;
Clinics should be organised differently – e.g. along themes/symptoms; one-stop style;
Use formal links with charities and voluntary sector;
Care planning should begin at the pre-diagnosis stage.

Needs focused

Some conditions have little research / best evidence, and therefore the model should be needs based, able to deal with the unpredictable nature of conditions;
Clinics and wards should be suitable for users e.g. hoist access in all clinical areas, and appropriate changing facilities / disabled accessible toilets designed to enable power-chairs;
Access to therapy services should continue when people are in acute hospital or a nursing home;
Consistency of approach for each episode – it often feels like starting again when a patient encounters a new therapist.

Leadership

Someone needs to ensure care plans are in place;
There needs to be clear accountability at local level to ensure arrangements remain effective;
Coordination arrangements must have recognition among the professions;
How will we know if it’s working?

Next Steps

Feedback from the workshop has been shared with the Neurology Review Team and workstream leads and will help shape the focus of those workstreams. Your insights will be of particular value to the workstreams looking at care pathways and the coordination of care.

The Department and our partners in the voluntary and community sector will identify further opportunities for engaging with patients and carers as the Review progresses. Further information on these opportunities will be shared in the coming weeks.

If you would like to give us any further thoughts or comments on the feedback from the July workshop, please contact us at hsrd@health-ni.gov.uk

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