MND Care Coordinator

We are looking for a Registered Nurse or Allied Health Professional to join us in this new, advanced clinical role. This is an exciting opportunity to play a crucial role in providing equitable care for Motor Neurone Disease across the Coventry and Warwickshire region.

This post has been made possible by the MND Association for the next four years, to establish this service and work with patients, carers & other services to enhance MND care and support.

You'll be working collaboratively with the Care Coordinator at Mary Ann Evans Hospice, where there is already an MND service, as well as other regional partners, multidisciplinary teams, neurology, respiratory, speech therapy, & palliative care services.

• Valid registration with a relevant professional body (e.g. NMC or HCPC)
• Relevant post-registration clinical experience (e.g. neurology, palliative care or community nursing)
• Experience of collaborating across healthcare, social care & voluntary sectors
• Knowledge & understanding of disease management & MND treatment
• Leadership, interpersonal, & communication skills
• Organisation and problem-solving skills, to be able to manage complex caseloads
• UK driving licence & use of a suitable vehicle for work

This role will support our work by enhancing care & support for MND & improving patient & carer experience.

An enhanced DBS check will be required, including the adults barred list, because you will be providing an healthcare service for adults.

Main duties of the job

This role will involve:

• Supporting people with MND & their families to manage symptoms
• Holistic needs assessment & management planning, from diagnosis to end of life
• Receiving, making & coordinating referrals
• Developing & coordinating seamless specialist care pathways between all external & internal stakeholders
• Establishing & providing an advisory service & a single point of contact for patients
• Monitoring outcomes & reporting
• Leading service development & improvement

You will be based on site at our Coventry Hospice, but with regular travel across the region, including home visits.

It is a full-time role at 37.5 hours, over 5 days, per week. Job share will also be considered.

Benefits of working at Myton

Myton is an amazing place to work, where the role every person plays has a positive impact for our patients, living with terminal illnesses, & their families. In recognition of this, we offer a wide range of benefits:

• NHS pension
• 28 days annual leave + bank holidays, increasing with long service
• Additional leave purchasing
• Free parking & discounted EV parking at our hospice sites
• Winter savings club
• Discount schemes including Blue Light Card
• Dedicated staff wellbeing team & mental health first aiders
• Colleague Support Service: confidential financial, legal & mental health support
• Cycle to work scheme
• Electric car scheme
• Free on-site flu jabs
• Free feminine hygiene products
• 24/7 GP access
• Free eye tests
• DoingOurBit online fitness and wellbeing platform
• Menopause support

About us

At The Myton Hospices, we provide specialist care and support for people with life-limiting illnesses, and their loved ones, from the point of diagnosis to end of life. We are a much-loved and well supported charity, at the heart of our community. We have three hospices, a range of community services, and 25 charity shops in Coventry and Warwickshire.

We are committed to building an inclusive workplace and encourage everyone to bring their true selves to work. However you identify, and whatever background you bring with you, we welcome you to apply. If there are any adjustments that would help improve your experience with Myton, we encourage you to share this with us.

If you would prefer a paper application form, or if you have any questions including about support or adjustments, please contact HR on 01926 838 849, recruitment@mytonhospice.org or by post: HR, Warwick Myton Hospice, Myton Lane, Warwick, CV34 6PX.

We now share interview questions with all candidates in advance, to help reduce nerves and enable you to truly show your best abilities. You are also welcome to bring any notes with you to your interview, if you would find this helpful.

Details

Date posted

30 September 2026

Pay scheme

Other

Salary

£49,387 to £51,932 a year

Contract

Fixed term

Duration

4 years

Working pattern

Full-time

Reference number

B0268-26-0028

Job locations

Coventry Myton Hospice

Clifford Bridge Road

Coventry

CV2 2HJ

United Kingdom

The Myton Hospices

Myton Lane

WARWICK

CV34 6PX

United Kingdom

Rugby Myton Support Hub

Barby Road

RUGBY

Warwickshire

CV22 5PY

United Kingdom

Job responsibilities

Key areas of responsibility

and accountability:

• Co-ordinate care and

provide a single point of access from diagnosis for patient, their families and

health and social care professionals.

• Establish a

relationship with patients and their families helping to enable them to make

informed decisions about treatment/care and advance care planning.

• Provide information

to patients and carers to enable them to make informed choices regarding care.

• Co-ordinate MND

clinics and the Multidisciplinary teams which promotes a proactive,

timely, and holistic approach to the care and management of people living with

MND and their families.

• Improve education

and awareness amongst health and social care professionals and care staff in

the Hospices, hospital, community and relevant care homes of the impact of a

diagnosis of MND on the patients, families and carers.

• Lead the coordination

of the multi-disciplinary team (MDT) meetings pre and post the combined clinic

and then to disseminate care plans to community allied health care professionals.

• Co-ordinate care

between the specialist practitioners within the hospital, the Community Health

and Social Care teams, hospices services and tertiary centres.

• To undertake

appropriate coordination of onward referrals.

• Maintain close collaboration

and communication with MND Association regional staff and with a view to

promoting the MND Association and the services it provides for people affected

by MND.

• To attend as

appropriate local MND Association Support Group meetings

• To vary the style and

level of communication with individuals in order to meet the differing levels

of understanding. Including those with cognitive impairment and those with

additional communication needs.

• Maintain and update electronic

patient records (EPR) where appropriate

• To process patient

referrals as the single point of access and liaise closely and align with

already established MND Co-ordination in the North of the County.

• To receive and make

referrals to the MND Association as appropriate.

• To support the process

of audit and service evaluation in collaboration with the MND Association.

• To support the family

bereavement process including follow up support and notifying other agencies

involved in the patients care about their death.

Care Coordination:

• Undertake complex

holistic needs assessments and complete management plans across the disease

trajectory from diagnosis to end of life.

• To co-ordinate with

key workers within the community to prevent delays in supportive treatment and

to avoid hospital admissions.

• To support, within

the relevant care setting, those newly diagnosed with MND.

• To work collaboratively

with regional partners such as Birmingham MND Care Centre, University Hospital

of Coventry and Warwickshire, Mary Ann Evans Hospice, The Shakespeare Hospice,

to ensure timely, high quality, equitable care for all people with MND in the

Coventry and Warwickshire ICB footprint.

• To support early

identification and review of inpatients and co-ordinate with community teams to

reduce length of stay.

• Use highly specialised

knowledge to work with people with MND, and their families in outpatient

clinics, in-patient settings, their own homes and other settings to manage

symptoms and provide support.

• Demonstrate the

use of advanced communication skills where appropriate to support patients and

families through life changing events.

• Initiate and make

referrals to Consultants, Physiotherapists, Nutritional, Respiratory and other

Specialist services where required.

• Have an

understanding and awareness of the range of MDT professionals care input that

will promote quality of life for people with MND, for example orthotics, OT

equipment, warning signs of dysphagia, voice banking, weight loss and

nutrition.

Management:

• Co-ordinate specialist

care following the diagnosis of MND.

• Provide an advisory

service across the whole of Coventry and Warwickshire as and when required

acting as a point of reference and specialist advice for patients, families and

health and social care professionals.

• Be responsible for planning and development of services within the local

area: identifying gaps in service, areas of good practice and ways to address

service improvement.

• Be responsible for the development and running of MND MDT clinics.
• Facilitate a seamless service in partnership and collaboration with all

multi and interdisciplinary agencies and persons involved.

Professional Development:

• Maintain

professional registration at all times.

• Maintain

excellent standards of documentation and be able to provide information

regarding the present needs of people with MND.

• Maintain

evidenced continued professional development.

• Attend annual MND

Association Care Centre and Network Day, Regional Special interest groups and

become an active member of the Associations Community of Practice.

Leadership:

• Act as a positive

role model and provide clinical leadership.

• Demonstrate the

highest professional standards and support the development of clinical

expertise.

• Lead the

development of practice within post holders specific area of professional practice.

• Establish and

lead Multidisciplinary teams in order to provide a systematic and holistic

approach to care and management of people with MND.

• Provide effective

local leadership and support of staff, planning and directing activities to

provide optimal standards of care.

• Support MDT staff

to feel confident and competent in delivering care to people with MND.

• Explore and

develop local pathways to recognise unmet need.

• Advise, initiate,

facilitate and implement changes in clinical practice to meet policy or service

development for specialist area, which may impact on other disciplines.

Communication:

• Demonstrate

excellent communication and organisational skills in balancing the demands of

this unpredictable and complex condition.

• Assess complex

issues and facilitate decision-making relating to patient care, safety,

treatment options and outcomes, and supervise others in doing this.

• Acknowledge and

accommodate barriers to communication and understanding including speech,

hearing, language and emotion.

• Use skills

(visual and auditory) to interpret the spoken word and understand patient

dialogue, i.e. being empathic, patient and able to concentrate on the spoken

word when patients struggle to form words and sentences.

• Use advanced

verbal and non-verbal communication skills to impart sensitive, complex and

potentially distressing information to patients and carers regarding disease

progression.

• Communicate

highly complex, sensitive information with people with MND and carers on MND to

ensure their active involvement in the medical care planning, treatment

delivery and informed consent process.

• Assist people

with MND, families and carers to develop understanding of MND promoting

self-management.

• Communicate in

ways that empower patients to make informed choices about their health and

care.

• Provide

specialist advice to a range of health care professionals within the scope of

specialist practice.

• Liaise with other

members of the multidisciplinary team to achieve optimum levels of care in

relation to specialised area of practice.

• Access external

networks with peers to share good practice.

• Present highly

complex and sensitive information within a variety of both formal and informal

settings.

• Build and

maintain links with local professionals and voluntary services and develop

expert knowledge of other local resources that can provide help and support

with e.g. benefits and bereavement services.

• Develop and

maintain an up-to-date database of local resources that can meet the needs of

people with MND and their families.

Leading

Service development:

• Work with partners and commissioners

to review and streamline pathways for accessing appropriate care and

interventions e.g. gastrostomy insertion, ensuring equity for patients across

the region.

• Working with partners, develop and

implement pathways to ensure that all people with MND have timely access to

genetic testing and access to disease modifying medication such as Tofersen if

appropriate.

• Deliver Training and

education for patients/family and carers, and health care professionals

(internally/externally) for complex case management, neuro-respiratory

conditions and interventions.

• Service evaluation -

Collates and records quantitative and qualitative data to provide evidence of

productivity, outcomes and quality, through audit and research

• Work in liaison with

the MND Association regarding grant, priorities, auditing.

• Work in partnership

with the MND Association on initiatives to develop and improve services to

support people with MND, their families and carers.

• Develops new skills

in response to emerging knowledge and techniques.

• Instigates and

manages change within a complex environment and advising other clinicians,

social care professionals, and voluntary agencies on the development of

services for people with MND.

• Develop, implement

and evaluate policies relevant to own area of work and within the parameters of

the MND Association objectives.

• Establish working

links with the MND Association to ensure access for patients and families to

the local support offered through volunteers, branches and support groups.

Education

and Training:

• To proactively lead

and develop knowledge and skills in others though formal and informal education.

• To act as a senior

clinical role model to other clinical staff in supporting the development of

others, sharing advanced level knowledge and skills.

• To lead the planning

and delivery of high-quality education and training events including but not

limited to topics like End-of-Life Care (EOLC), respiratory care for both

internal and external provision.

• To provide training

and supervision for other staff members on the use of specialised equipment and

develop supporting documentation for this.

• Lead

on submitting articles for publication to share improvement work.

Job responsibilities

Key areas of responsibility

and accountability:

• Co-ordinate care and

provide a single point of access from diagnosis for patient, their families and

health and social care professionals.

• Establish a

relationship with patients and their families helping to enable them to make

informed decisions about treatment/care and advance care planning.

• Provide information

to patients and carers to enable them to make informed choices regarding care.

• Co-ordinate MND

clinics and the Multidisciplinary teams which promotes a proactive,

timely, and holistic approach to the care and management of people living with

MND and their families.

• Improve education

and awareness amongst health and social care professionals and care staff in

the Hospices, hospital, community and relevant care homes of the impact of a

diagnosis of MND on the patients, families and carers.

• Lead the coordination

of the multi-disciplinary team (MDT) meetings pre and post the combined clinic

and then to disseminate care plans to community allied health care professionals.

• Co-ordinate care

between the specialist practitioners within the hospital, the Community Health

and Social Care teams, hospices services and tertiary centres.

• To undertake

appropriate coordination of onward referrals.

• Maintain close collaboration

and communication with MND Association regional staff and with a view to

promoting the MND Association and the services it provides for people affected

by MND.

• To attend as

appropriate local MND Association Support Group meetings

• To vary the style and

level of communication with individuals in order to meet the differing levels

of understanding. Including those with cognitive impairment and those with

additional communication needs.

• Maintain and update electronic

patient records (EPR) where appropriate

• To process patient

referrals as the single point of access and liaise closely and align with

already established MND Co-ordination in the North of the County.

• To receive and make

referrals to the MND Association as appropriate.

• To support the process

of audit and service evaluation in collaboration with the MND Association.

• To support the family

bereavement process including follow up support and notifying other agencies

involved in the patients care about their death.

Care Coordination:

• Undertake complex

holistic needs assessments and complete management plans across the disease

trajectory from diagnosis to end of life.

• To co-ordinate with

key workers within the community to prevent delays in supportive treatment and

to avoid hospital admissions.

• To support, within

the relevant care setting, those newly diagnosed with MND.

• To work collaboratively

with regional partners such as Birmingham MND Care Centre, University Hospital

of Coventry and Warwickshire, Mary Ann Evans Hospice, The Shakespeare Hospice,

to ensure timely, high quality, equitable care for all people with MND in the

Coventry and Warwickshire ICB footprint.

• To support early

identification and review of inpatients and co-ordinate with community teams to

reduce length of stay.

• Use highly specialised

knowledge to work with people with MND, and their families in outpatient

clinics, in-patient settings, their own homes and other settings to manage

symptoms and provide support.

• Demonstrate the

use of advanced communication skills where appropriate to support patients and

families through life changing events.

• Initiate and make

referrals to Consultants, Physiotherapists, Nutritional, Respiratory and other

Specialist services where required.

• Have an

understanding and awareness of the range of MDT professionals care input that

will promote quality of life for people with MND, for example orthotics, OT

equipment, warning signs of dysphagia, voice banking, weight loss and

nutrition.

Management:

• Co-ordinate specialist

care following the diagnosis of MND.

• Provide an advisory

service across the whole of Coventry and Warwickshire as and when required

acting as a point of reference and specialist advice for patients, families and

health and social care professionals.

• Be responsible for planning and development of services within the local

area: identifying gaps in service, areas of good practice and ways to address

service improvement.

• Be responsible for the development and running of MND MDT clinics.
• Facilitate a seamless service in partnership and collaboration with all

multi and interdisciplinary agencies and persons involved.

Professional Development:

• Maintain

professional registration at all times.

• Maintain

excellent standards of documentation and be able to provide information

regarding the present needs of people with MND.

• Maintain

evidenced continued professional development.

• Attend annual MND

Association Care Centre and Network Day, Regional Special interest groups and

become an active member of the Associations Community of Practice.

Leadership:

• Act as a positive

role model and provide clinical leadership.

• Demonstrate the

highest professional standards and support the development of clinical

expertise.

• Lead the

development of practice within post holders specific area of professional practice.

• Establish and

lead Multidisciplinary teams in order to provide a systematic and holistic

approach to care and management of people with MND.

• Provide effective

local leadership and support of staff, planning and directing activities to

provide optimal standards of care.

• Support MDT staff

to feel confident and competent in delivering care to people with MND.

• Explore and

develop local pathways to recognise unmet need.

• Advise, initiate,

facilitate and implement changes in clinical practice to meet policy or service

development for specialist area, which may impact on other disciplines.

Communication:

• Demonstrate

excellent communication and organisational skills in balancing the demands of

this unpredictable and complex condition.

• Assess complex

issues and facilitate decision-making relating to patient care, safety,

treatment options and outcomes, and supervise others in doing this.

• Acknowledge and

accommodate barriers to communication and understanding including speech,

hearing, language and emotion.

• Use skills

(visual and auditory) to interpret the spoken word and understand patient

dialogue, i.e. being empathic, patient and able to concentrate on the spoken

word when patients struggle to form words and sentences.

• Use advanced

verbal and non-verbal communication skills to impart sensitive, complex and

potentially distressing information to patients and carers regarding disease

progression.

• Communicate

highly complex, sensitive information with people with MND and carers on MND to

ensure their active involvement in the medical care planning, treatment

delivery and informed consent process.

• Assist people

with MND, families and carers to develop understanding of MND promoting

self-management.

• Communicate in

ways that empower patients to make informed choices about their health and

care.

• Provide

specialist advice to a range of health care professionals within the scope of

specialist practice.

• Liaise with other

members of the multidisciplinary team to achieve optimum levels of care in

relation to specialised area of practice.

• Access external

networks with peers to share good practice.

• Present highly

complex and sensitive information within a variety of both formal and informal

settings.

• Build and

maintain links with local professionals and voluntary services and develop

expert knowledge of other local resources that can provide help and support

with e.g. benefits and bereavement services.

• Develop and

maintain an up-to-date database of local resources that can meet the needs of

people with MND and their families.

Leading

Service development:

• Work with partners and commissioners

to review and streamline pathways for accessing appropriate care and

interventions e.g. gastrostomy insertion, ensuring equity for patients across

the region.

• Working with partners, develop and

implement pathways to ensure that all people with MND have timely access to

genetic testing and access to disease modifying medication such as Tofersen if

appropriate.

• Deliver Training and

education for patients/family and carers, and health care professionals

(internally/externally) for complex case management, neuro-respiratory

conditions and interventions.

• Service evaluation -

Collates and records quantitative and qualitative data to provide evidence of

productivity, outcomes and quality, through audit and research

• Work in liaison with

the MND Association regarding grant, priorities, auditing.

• Work in partnership

with the MND Association on initiatives to develop and improve services to

support people with MND, their families and carers.

• Develops new skills

in response to emerging knowledge and techniques.

• Instigates and

manages change within a complex environment and advising other clinicians,

social care professionals, and voluntary agencies on the development of

services for people with MND.

• Develop, implement

and evaluate policies relevant to own area of work and within the parameters of

the MND Association objectives.

• Establish working

links with the MND Association to ensure access for patients and families to

the local support offered through volunteers, branches and support groups.

Education

and Training:

• To proactively lead

and develop knowledge and skills in others though formal and informal education.

• To act as a senior

clinical role model to other clinical staff in supporting the development of

others, sharing advanced level knowledge and skills.

• To lead the planning

and delivery of high-quality education and training events including but not

limited to topics like End-of-Life Care (EOLC), respiratory care for both

internal and external provision.

• To provide training

and supervision for other staff members on the use of specialised equipment and

develop supporting documentation for this.

• Lead

on submitting articles for publication to share improvement work.

Person Specification

Other

Essential

• Ability to travel across Coventry and Warwickshire
• Full clean driving licence and use of a car
• Ability to work flexibly where required
• The right to work in the UK

Skills and Attributes

Essential

• Highly organised with the ability to manage own workload and priorities
• Ability to manage complex information and caseloads
• Strong interpersonal skills with the ability to build relationships with a wide range of people
• Excellent communication skills both written and verbally
• Good IT skills with competency around using Microsoft packages and familiar with the use of databases
• High degree of motivation, commitment and the ability to use own initiative
• Ability to problem solve
• Leadership skills

Experience

Essential

• Significant post Registration experience in a relevant clinical area (Neurology, palliative care, or community Nursing)
• Knowledge and understanding of disease management and treatment of MND
• Experience of collaborating across healthcare, social care, and voluntary sectors
• Evidence of clinical leadership, service improvement, or quality assurance initiatives

Desirable

• Experience of service development and improvement

Qualifications

Essential

• Valid Registration with a professional body (e.g., NMC for Registered Nurses, HCPC for Allied Health professionals
• First Degree or equivalent

Desirable

• Post-Registration specialist training in neurology or palliative care
• Clinical Leadership Qualification
• Advanced Communication Skills certificate
• Masters degree

Person Specification

Other

Essential

• Ability to travel across Coventry and Warwickshire
• Full clean driving licence and use of a car
• Ability to work flexibly where required
• The right to work in the UK

Skills and Attributes

Essential

• Highly organised with the ability to manage own workload and priorities
• Ability to manage complex information and caseloads
• Strong interpersonal skills with the ability to build relationships with a wide range of people
• Excellent communication skills both written and verbally
• Good IT skills with competency around using Microsoft packages and familiar with the use of databases
• High degree of motivation, commitment and the ability to use own initiative
• Ability to problem solve
• Leadership skills

Experience

Essential

• Significant post Registration experience in a relevant clinical area (Neurology, palliative care, or community Nursing)
• Knowledge and understanding of disease management and treatment of MND
• Experience of collaborating across healthcare, social care, and voluntary sectors
• Evidence of clinical leadership, service improvement, or quality assurance initiatives

Desirable

• Experience of service development and improvement

Qualifications

Essential

• Valid Registration with a professional body (e.g., NMC for Registered Nurses, HCPC for Allied Health professionals
• First Degree or equivalent

Desirable

• Post-Registration specialist training in neurology or palliative care
• Clinical Leadership Qualification
• Advanced Communication Skills certificate
• Masters degree

Disclosure and Barring Service Check

This post is subject to the Rehabilitation of Offenders Act (Exceptions Order) 1975 and as such it will be necessary for a submission for Disclosure to be made to the Disclosure and Barring Service (formerly known as CRB) to check for any previous criminal convictions.

UK Registration

Applicants must have current UK professional registration. For further information please see

NHS Careers website .

Additional information

Disclosure and Barring Service Check

This post is subject to the Rehabilitation of Offenders Act (Exceptions Order) 1975 and as such it will be necessary for a submission for Disclosure to be made to the Disclosure and Barring Service (formerly known as CRB) to check for any previous criminal convictions.

UK Registration

Applicants must have current UK professional registration. For further information please see

NHS Careers website .

Employer details

Employer name

The Myton Hospices

Address

Coventry Myton Hospice

Clifford Bridge Road

Coventry

CV2 2HJ

United Kingdom

Employer's website

https://www.mytonhospice.org/ (Opens in a new tab)

Employer details

Employer name

The Myton Hospices

Address

Coventry Myton Hospice

Clifford Bridge Road

Coventry

CV2 2HJ

United Kingdom

Employer's website

https://www.mytonhospice.org/ (Opens in a new tab)

Job responsibilities

Key areas of responsibility

and accountability:

• Co-ordinate care and

provide a single point of access from diagnosis for patient, their families and

health and social care professionals.

• Establish a

relationship with patients and their families helping to enable them to make

informed decisions about treatment/care and advance care planning.

• Provide information

to patients and carers to enable them to make informed choices regarding care.

• Co-ordinate MND

clinics and the Multidisciplinary teams which promotes a proactive,

timely, and holistic approach to the care and management of people living with

MND and their families.

• Improve education

and awareness amongst health and social care professionals and care staff in

the Hospices, hospital, community and relevant care homes of the impact of a

diagnosis of MND on the patients, families and carers.

• Lead the coordination

of the multi-disciplinary team (MDT) meetings pre and post the combined clinic

and then to disseminate care plans to community allied health care professionals.

• Co-ordinate care

between the specialist practitioners within the hospital, the Community Health

and Social Care teams, hospices services and tertiary centres.

• To undertake

appropriate coordination of onward referrals.

• Maintain close collaboration

and communication with MND Association regional staff and with a view to

promoting the MND Association and the services it provides for people affected

by MND.

• To attend as

appropriate local MND Association Support Group meetings

• To vary the style and

level of communication with individuals in order to meet the differing levels

of understanding. Including those with cognitive impairment and those with

additional communication needs.

• Maintain and update electronic

patient records (EPR) where appropriate

• To process patient

referrals as the single point of access and liaise closely and align with

already established MND Co-ordination in the North of the County.

• To receive and make

referrals to the MND Association as appropriate.

• To support the process

of audit and service evaluation in collaboration with the MND Association.

• To support the family

bereavement process including follow up support and notifying other agencies

involved in the patients care about their death.

Care Coordination:

• Undertake complex

holistic needs assessments and complete management plans across the disease

trajectory from diagnosis to end of life.

• To co-ordinate with

key workers within the community to prevent delays in supportive treatment and

to avoid hospital admissions.

• To support, within

the relevant care setting, those newly diagnosed with MND.

• To work collaboratively

with regional partners such as Birmingham MND Care Centre, University Hospital

of Coventry and Warwickshire, Mary Ann Evans Hospice, The Shakespeare Hospice,

to ensure timely, high quality, equitable care for all people with MND in the

Coventry and Warwickshire ICB footprint.

• To support early

identification and review of inpatients and co-ordinate with community teams to

reduce length of stay.

• Use highly specialised

knowledge to work with people with MND, and their families in outpatient

clinics, in-patient settings, their own homes and other settings to manage

symptoms and provide support.

• Demonstrate the

use of advanced communication skills where appropriate to support patients and

families through life changing events.

• Initiate and make

referrals to Consultants, Physiotherapists, Nutritional, Respiratory and other

Specialist services where required.

• Have an

understanding and awareness of the range of MDT professionals care input that

will promote quality of life for people with MND, for example orthotics, OT

equipment, warning signs of dysphagia, voice banking, weight loss and

nutrition.

Management:

• Co-ordinate specialist

care following the diagnosis of MND.

• Provide an advisory

service across the whole of Coventry and Warwickshire as and when required

acting as a point of reference and specialist advice for patients, families and

health and social care professionals.

• Be responsible for planning and development of services within the local

area: identifying gaps in service, areas of good practice and ways to address

service improvement.

• Be responsible for the development and running of MND MDT clinics.
• Facilitate a seamless service in partnership and collaboration with all

multi and interdisciplinary agencies and persons involved.

Professional Development:

• Maintain

professional registration at all times.

• Maintain

excellent standards of documentation and be able to provide information

regarding the present needs of people with MND.

• Maintain

evidenced continued professional development.

• Attend annual MND

Association Care Centre and Network Day, Regional Special interest groups and

become an active member of the Associations Community of Practice.

Leadership:

• Act as a positive

role model and provide clinical leadership.

• Demonstrate the

highest professional standards and support the development of clinical

expertise.

• Lead the

development of practice within post holders specific area of professional practice.

• Establish and

lead Multidisciplinary teams in order to provide a systematic and holistic

approach to care and management of people with MND.

• Provide effective

local leadership and support of staff, planning and directing activities to

provide optimal standards of care.

• Support MDT staff

to feel confident and competent in delivering care to people with MND.

• Explore and

develop local pathways to recognise unmet need.

• Advise, initiate,

facilitate and implement changes in clinical practice to meet policy or service

development for specialist area, which may impact on other disciplines.

Communication:

• Demonstrate

excellent communication and organisational skills in balancing the demands of

this unpredictable and complex condition.

• Assess complex

issues and facilitate decision-making relating to patient care, safety,

treatment options and outcomes, and supervise others in doing this.

• Acknowledge and

accommodate barriers to communication and understanding including speech,

hearing, language and emotion.

• Use skills

(visual and auditory) to interpret the spoken word and understand patient

dialogue, i.e. being empathic, patient and able to concentrate on the spoken

word when patients struggle to form words and sentences.

• Use advanced

verbal and non-verbal communication skills to impart sensitive, complex and

potentially distressing information to patients and carers regarding disease

progression.

• Communicate

highly complex, sensitive information with people with MND and carers on MND to

ensure their active involvement in the medical care planning, treatment

delivery and informed consent process.

• Assist people

with MND, families and carers to develop understanding of MND promoting

self-management.

• Communicate in

ways that empower patients to make informed choices about their health and

care.

• Provide

specialist advice to a range of health care professionals within the scope of

specialist practice.

• Liaise with other

members of the multidisciplinary team to achieve optimum levels of care in

relation to specialised area of practice.

• Access external

networks with peers to share good practice.

• Present highly

complex and sensitive information within a variety of both formal and informal

settings.

• Build and

maintain links with local professionals and voluntary services and develop

expert knowledge of other local resources that can provide help and support

with e.g. benefits and bereavement services.

• Develop and

maintain an up-to-date database of local resources that can meet the needs of

people with MND and their families.

Leading

Service development:

• Work with partners and commissioners

to review and streamline pathways for accessing appropriate care and

interventions e.g. gastrostomy insertion, ensuring equity for patients across

the region.

• Working with partners, develop and

implement pathways to ensure that all people with MND have timely access to

genetic testing and access to disease modifying medication such as Tofersen if

appropriate.

• Deliver Training and

education for patients/family and carers, and health care professionals

(internally/externally) for complex case management, neuro-respiratory

conditions and interventions.

• Service evaluation -

Collates and records quantitative and qualitative data to provide evidence of

productivity, outcomes and quality, through audit and research

• Work in liaison with

the MND Association regarding grant, priorities, auditing.

• Work in partnership

with the MND Association on initiatives to develop and improve services to

support people with MND, their families and carers.

• Develops new skills

in response to emerging knowledge and techniques.

• Instigates and

manages change within a complex environment and advising other clinicians,

social care professionals, and voluntary agencies on the development of

services for people with MND.

• Develop, implement

and evaluate policies relevant to own area of work and within the parameters of

the MND Association objectives.

• Establish working

links with the MND Association to ensure access for patients and families to

the local support offered through volunteers, branches and support groups.

Education

and Training:

• To proactively lead

and develop knowledge and skills in others though formal and informal education.

• To act as a senior

clinical role model to other clinical staff in supporting the development of

others, sharing advanced level knowledge and skills.

• To lead the planning

and delivery of high-quality education and training events including but not

limited to topics like End-of-Life Care (EOLC), respiratory care for both

internal and external provision.

• To provide training

and supervision for other staff members on the use of specialised equipment and

develop supporting documentation for this.

• Lead

on submitting articles for publication to share improvement work.

Other

Essential

• Ability to travel across Coventry and Warwickshire
• Full clean driving licence and use of a car
• Ability to work flexibly where required
• The right to work in the UK

Skills and Attributes

Essential

• Highly organised with the ability to manage own workload and priorities
• Ability to manage complex information and caseloads
• Strong interpersonal skills with the ability to build relationships with a wide range of people
• Excellent communication skills both written and verbally
• Good IT skills with competency around using Microsoft packages and familiar with the use of databases
• High degree of motivation, commitment and the ability to use own initiative
• Ability to problem solve
• Leadership skills

Experience

Essential

• Significant post Registration experience in a relevant clinical area (Neurology, palliative care, or community Nursing)
• Knowledge and understanding of disease management and treatment of MND
• Experience of collaborating across healthcare, social care, and voluntary sectors
• Evidence of clinical leadership, service improvement, or quality assurance initiatives

Desirable

• Experience of service development and improvement

Qualifications

Essential

• Valid Registration with a professional body (e.g., NMC for Registered Nurses, HCPC for Allied Health professionals
• First Degree or equivalent

Desirable

• Post-Registration specialist training in neurology or palliative care
• Clinical Leadership Qualification
• Advanced Communication Skills certificate
• Masters degree