LIVING WELL WITH MOTOR NEURONE DISEASE, FOR ALL OF LIFE

At Prestige Nursing & Care, we believe that everyone living with motor neurone disease (MND) can lead a happy, fulfilled and healthy life with the right support, tailored to their individual needs.

As an established home care provider, we have supported individuals living with motor neurone disease to enjoy an improved quality of life in their own homes and communities for over 75 years. We are trusted by families up and down the country to provide care for all of life, evolving the level and type of care we provide to meet changing needs.

YOUR HOME IS BEST FOR MND CARE AND SUPPORT

For many people living with motor neurone disease, the last place they wish to receive care and support to develop and remain independent would be in a specialist care setting, whether on a temporary or permanent basis. The thought of leaving the comfort and safety of home can cause anxiety, depression and other mental health problems for those living with motor neurone disease.

Receiving the one-to-one care and support you need in the familiar surroundings of your own home can significantly improve your quality of life and enhance your well-being. Care at home enables you to remain independent and live your life with choice, whilst supporting you to successfully meet development milestones.

WHAT IS MOTOR NEURONE DISEASE?

Motor Neurone Disease (MND) is a group of progressive diseases that affects the nerves in the brain and spinal cord called motor neurones. Motor neurons are nerve cells that convey messages from the brain or spinal cord to muscles. With MND, these motor neurons eventually stop communicating effectively with muscles leading to them stiffening, weakening and eventually deteriorating. Whilst MND can affect anyone at any age, it typically affects people over 50 years old.

COMMON SYMPTOMS OF MOTOR NEURONE DISEASE

MND affects everyone differently and symptoms will vary in severity. Symptoms will progress at different speeds in people making the progression of the disease hard to predict for those caring for someone living with MND.

Whilst the majority of symptoms are physical due to muscle weakness, for some people MND can affect their thinking and behaviour. They may have problems with walking, talking, eating and drinking.

Specific symptoms of motor neurone disease include:

Muscle weakness and eventual muscle waste resulting in limited movement
Cramps and spasms in the muscles
Stiff joints affecting mobility and movement
Discomfort and pain from symptoms
Behaviour changes – some people develop frontotemporal dementia
Weak coughing making it hard to clear the throat
Breathing problems
Fatigue
Swallowing and saliva problems affecting how you eat and drink
Emotional challenges.
Problems with speech and communication, particularly in relation to expressions and gesturing
Slurred speech

OUR APPROACH TO MOTOR NEURONE DISEASE CARE AT HOME

At Prestige Nursing & Care, we provide a care and support package that enables you to live a happy and fulfilled life in the safety and comfort of your own home. The support we provide will be guided by you and tailored to your needs, giving you choice over how you live your life and the support you want.

Our carers provide a wide range of services designed to help you get the most enjoyment out of life. This could include:

Preparing a tasty and nutritious breakfast to help you start your day
Discreet and sensitive assistance with personal care routines such as washing or dressing
Support in staying active and enjoying your favourite hobbies and activities
Help with domestic tasks around the home including light housekeeping, shopping or running errands
Helping you manage your medications and ensuring you always have a ready supply

We work collaboratively with our clients and their families to develop a thorough care and support plan that encompasses a person’s needs. We work in partnership with local authority partners, NHS services, multidisciplinary teams, therapists and other community bodies involved in a person’s motor neurone care. This means we are well-informed to respond efficiently to changing needs and supplement the care we provide when required.

Our carers are expertly trained to understand MND and how it progresses. Whilst MND is hard to predict, having a care team that really gets to know you and monitors your health regularly means that a nursing care plan for motor neurone disease is in place just when you need it most. We adopt a sensitive and dignified approach to care that ensures you get the most out of life.

If you need nurse-led motor neurone care, our carers will be trained to meet all your nursing needs, including managing and assisting with medications to ensure your regime is maintained, supporting you if you have a feeding tube and help using an assisted ventilation machine and other equipment needed to support your day-to-day life ensuring you get the most out of life.

We know that those living with motor neurone disease how important psychological support is and are carers are on hand to provide all the support you need. Our registered mental health nurses have a wealth of experience in psychological support provision, and we ensure it is integral part of what we provide to our clients optimising a holistic approach to symptom management.

We know that those who need motor neurone care are also likely to have low self-esteem and many live with depression associated with their condition. Our carers not only able to meet your motor neurone care needs but are on hand to support emotional and psychological needs too. They are always proactive in building self-esteem through positive and gentle encouragement, adopting measures which help to reduce anxiety and fear, whilst being sensitive and respectful.

SPECIALIST PALLIATIVE CARE FOR THOSE LIVING WITH MOTOR NEURONE DISEASE

We provide a sensitive and effective motor neurone disease care pathway for those needing palliative care. We know through our experience of supporting those who need motor neurone palliative care at home how important it is that respiratory symptoms are effectively managed towards the end-of-life.

Our vigilant carers, supported by our expert registered nurses, are trained to recognise early signs of respiratory impairment so that the right nursing plan for motor neurone disease care is delivered at the right time. We know how frightening it can be for a person experiencing respiratory impairments and our carers are trained not only to provide non-invasive ventilation and other clinical interventions but also to provide much-needed emotional and psychological support.

We work alongside the family and in partnership with other healthcare professionals to ensure care is planned in advance so that symptoms are identified in a timely manner and effectively managed – all with sensitivity, compassion and empathy.

COMPETENT AND COMPASSIONATE CARERS

When you choose Prestige Nursing & Care, you can be assured that the carer who attends you or your loved one is expertly trained to provide the support you need, to the high standards you should expect.

If you are receiving complex care at home, the carers we choose to support your needs will have at least six months of care or health sector experience before they come to care for you. In addition to completing our induction training programme, which goes above mandatory requirements, they are trained by our registered nurses, clinical experts and other healthcare professionals involved in providing care to a specific client. This hands-on nurse training means our carers competently undertake a range of clinical interventions.

We adopt a bespoke approach to training that ensures our carers have the knowledge, skills and aptitude to deliver high-quality complex care that meets the very specific needs of our clients. Through our unrivalled supervision and clinical oversight carers can adapt their approach and evolve the care they provide to meet changing needs.

We are very proud of our carers – each and every one of them is dedicated to providing compassionate, sensitive and dignified complex care at home that means our clients live a fulfilled and meaningful life, with independence and choice, for all of life.

CLINICAL EXCELLENCE AT PRESTIGE NURSING & CARE

Clinical excellence is at the heart of our culture and approach to service delivery at Prestige Nursing & Care. Our nurse-led home care service is monitored and supported by our experienced regional nursing teams. Our team of qualified regional nurses are registered with the Nursing and Midwifery Council (NMC). Each holds a registered nursing qualification in at least one nursing specialism, including general adult nursing, learning and disability nursing, mental health nursing and children’s nursing. They enable the planning and delivery of safe and effective complex care to our clients which is focused on ensuring the best possible care experience for our clients and their families.

Our nurses work in partnership with our care coordinators, carers, clients and families to identify specific care needs and plan the most appropriate care provision, whilst ensuring all our carers have the skills they need to deliver high standards of nurse-led care. They also provide families with ongoing advice and continual support to ensure they feel reassured about the service we provide.

Case Study

Highly personalised mind care for jack around-the-clock Jack is in his 50’s and has motor neurones disease requiring numerous complex interventions.

Highly personalised mind care for jack around-the-clock

Jack is in his 50’s and has motor neurones disease requiring numerous complex interventions.

When the family contacted Prestige Nursing & Care, we undertook a comprehensive assessment of his needs working closely with Jack and his family, detailing the outcomes he wished to achieve. One of the most important things for Jack was that he was able to have time to himself to watch the TV programmes he liked, whilst his wife was able to do things that she liked providing respite from caring for him. It was imperative to both Jack and his wife that he was able to be cared for in his own home and not be cared for in clinical environment or specialist care setting. We provided an effective and positive response to Jack’s motor neurone needs ensuring he and his wife were at the heart of the care planning process. A care team was carefully selected so they would meet not just Jack’s clinical needs, but that they were aligned to how both Jack and his wife wished to enjoy life and their time together. The care team considered various activities they could engage Jack’s wife in so that Jack could have the ‘me’ time he craved, whilst she did not feel guilty about not being right by his side. One of the care team suggested a charity initiative to knit baby hats for their local hospital’s children’s unit. Whilst the carer and Jack’s wife were happily engaged in their project, Jack was afforded time to himself undisturbed. Jack’s motor neurone care package started as night-time care, whilst his wife rested and slept, but given the level of his needs and interventions required quickly became a 24-hour care service, some of which was delivered by two carers at the same time due to Jack’s complex moving and handling requirements. The provision of our tailored care package provided by a team of highly skilled carers that truly understood Jack’s needs meant that he was able to stay in the comfort of his own home and not endure a move, that he absolutely did not want into a clinical care setting away from his beloved wife and much-loved home.

WHAT DOES OUR HOME CARE SERVICE INCLUDE FOR THOSE LIVING WITH MND?

CONDITION-LED CARE

We provide specialist care of conditions that affect a person’s ability to live well. Whatever specialist condition you are living with, our carers are supported by our expert nursing and clinical teams to ensure you live a life with improved quality and health outcomes, whilst maintaining choice and independence.

EXPERT NURSE-LED CARE

Our service is nurse-led and carers are trained in the clinical skills required to provide care and support for complex, terminal and other medical conditions that impact how you live your life. They are supported by an experienced, dedicated registered nurse who undertakes regular competency assessments to ensure high standards of care delivery and provides clinical monitoring, supervision and support. With this leadership and oversight carers can perform many delegated healthcare tasks and clinical interventions at home.

CONSIDERATE COMPANIONSHIP

Companionship is at the forefront of everything we do. Our carers will support your social, emotional and psychological needs as well as your care needs so you can live a fulfilled life, for all of life. At Prestige Nursing & Care we will match you with the most suitable carers so that interests and backgrounds are aligned as we know this makes for an enriched and enjoyable life. Our carers will support you to maintain friendships and social interests, whilst ensuring you continue to be connected to things you care about in your local community.

SENSITIVE PERSONAL CARE

Our carers are trained to provide personal care in a way that is compassionate, respectful and sensitive. They will support you with the tasks of bathing, personal hygiene, dressing and continence care, whilst ensuring you are always looking and feeling your best as we know how this builds self-esteem.

SAFE MOBILITY AT HOME

Our carers are trained to support safe mobility in and around the home – everything from transferring and positioning to minimising falls through effective assessment of risk, to facilitating and supporting safe movement. They will effectively assess risks and work with clients who wish to take ‘positive risks’ so that they can have as much independence as possible and live life as you wish.

EFFICIENT MEDICATION ADMINISTRATION

For the majority of our clients ensuring medications are managed effectively is critical to their health and well-being. Our carers can manage complex medication regimes, providing sensitive reminders and collecting medication from the pharmacy.

MEAL PREPARATION AND COOKING

Our carers will help by planning your meals, preparing and cooking your food for you, or with you whilst supporting you to eat if needed. They will focus on ensuring the food you eat meets your health and nutritional needs, whilst maintaining your preferences and choices.

HOUSEHOLD TASKS IN AND OUT OF THE HOME

Our carers will make sure your house is clean, laundry is done as required and will undertake any shopping or errands outside the home. They will also happily provide care to your beloved pet.

HOME FROM HOSPITAL

We work closely with community nursing teams and hospital discharge planners to support a swift and effective discharge from hospital ensuring the right care and support is in place. Our high-quality, home care service delivered by trained and experienced carers and overseen by clinical experts is focused on achieving outcomes that significantly reduce hospital admissions.

REABLEMENT CARE

For clients who need to relearn skills our carers assist goal-focussed care at home that involves intensive time-limited assessment and therapy intended to reduce the need for a long-term care arrangement or readmission to hospital.

ENABLEMENT CARE

We provide support to people who need to learn new skills to improve the overall quality of their life with as much independence as possible. Our carers are focused on enabling a person to do as much for themselves as possible with the right support, as opposed to just doing it for them. We know this means people can live a more fulfilled and purposeful life.

REHABILITATION

We assist outcome-based rehabilitation at home following a life-altering incident supports an individual with mobility, physical development and mental health well-being. We adopt a multi-disciplinary approach to the service we provide working in collaboration with other healthcare professionals, including physiotherapists, occupational therapists and speech and language therapists to ensure a high-quality, holistic and responsive approach to the brain injury care we provide.

PALLIATIVE / END-OF-LIFE CARE

Our compassionate and competent carers are there to support those who need palliative or end-of-life care. They are trained to ensure an individual’s medical, physical, psychological, social and spiritual well-being is enhanced, whilst ensuring a person’s wishes, choices and preferences are met until the very end-of-life.

HOW WE PROVIDE CARE AT HOME FOR THOSE LIVING WITH MOTOR NEURONE DISEASE

Our trusted and established care at home service can be provided in the following ways for those living with motor neurone disease:

Hourly care or visiting care for those who need extra support with the tasks of daily living or clinical care at certain times during the day. Care at home can be provided from a 60-minute visit per day to as many hours/visits throughout the day as you require. One day a week or several days depending on your care and support needs. For those with complex needs, hourly care can be provided over a 24-hour period.
Live-in care for when a permanent care arrangement is needed with greater levels of support around the clock to ensure a person can live well at home. Through our family of leading home care brands in the UK, we are able to offer award-winning live-in care rated ‘Outstanding’ by The Care Quality Commission (CQC).
Respite care for those needing a short-term arrangement after hospital discharge to rehabilitate or when a family carer needs a break from their caring role. It is also an ideal service for families who wish to assess whether care at home is the right care choice for them.

CARE MANAGEMENT LOCAL TO YOU

Our responsive and reliable MND care service local to you means we can put care and support in place quickly and in many cases within 24 hours. Our local registered nurse will conduct a comprehensive assessment of your needs at home, in hospital or in any specialist care setting if you are awaiting discharge back to your own home. This enables us to create a plan of care and support that meets all your needs.

Our approach to care planning ensures we capture all your preferences and wishes so you can live a contented life in the comfort of your own home. We take time to find the carer that would best meet your care and support needs, making sure they are closely aligned with how you wish to live your life. Once care is in place, our local teams made up of care and clinical experts provide you, your family and our carer with an abundance of ongoing support, giving you peace of mind that you or your loved one is receiving the very best home care.

Our responsive local care at home service for those living with motor neurone disease means we can put care and support in place quickly and in many cases within 24 hours.

THE BENEFITS OF A FULLY-MANAGED SERVICE

Prestige Nursing & Care is not an agency. Unlike a home care agency, we provide a fully managed and regulated care-at-home service. This means our clients, their families and our professional partners can be reassured that the care and support we provide those living with motor neurone disease is of the very highest quality.

Our service is inspected by the Care Quality Commission (CQC) in England and the Scottish Care Inspectorate (SCI) in Scotland. We are proud that 96% of our inspected services have been rated as providing a ‘Good’ service, with 4% rated ‘Outstanding’ and our services in Scotland have been awarded a five-star rating.

Our accredited service for complex care meets local and national quality standards and ensures a consistent approach.

COST OF MND CARE

The cost of motor neurone disease care is dependent on the level of care and support you require. If you are receiving our hourly motor neurone disease care, the overall cost will be determined by the number of visits and frequency of visits to you at home. Our experts will conduct a comprehensive assessment at your home, or in hospital if you are awaiting discharge, to understand what you need and therefore how much motor neurone disease care at home will cost.

We know that our cost of professional motor neurone disease care is very competitive when compared with other home care providers. It is worth noting that when comparing the cost of home care with a care package in a care home, that the fee you pay for home care is actually for the care and support you receive. In a care home your weekly fee mainly covers your accommodation, food and social activities with the care package being only a small part of what you pay.You may be entitled to either healthcare funding , social care funding or Government funding to contribute to the cost of motor neurone disease care. If you are faced with having to finance your own home care (known as self-funding care), there are initiatives available to you, including care fees annuities or equity release schemes that could provide the funds you need for your care and support

RESPONSIVE LOCAL TEAMS WITH NATIONWIDE COVERAGE

We provide care and support to those living with motor neurone disease in over 30 locations in the heart of communities across England and Scotland. The fully managed service we provide is highly responsive and our experts local to you put care packages in place quickly. We work in collaboration with local healthcare professionals, multidisciplinary teams, therapeutic care providers and other community support services. We know this all-encompassing approach ensures our clients get the best out of life, for all of life.

Find a care service near you

Find out why our clients choose Prestige Nursing & Care for a high quality, responsive home care service.

MND CARE FAQS

WHAT IS MOTOR NEURONE CARE?

Motor neurone care is specialist support designed to alleviate some of the practical and emotional challenges of living with MND. Our carers tailor their methods to help you manage the symptoms of MND. You wil lbe able to enjoy greater independence and an improved quality of life. On top of providing practical support, our carers are a source of companionship and emotional support.

HOW DO I ARRANGE MND CARE?

We are here to help you and your family every step of the way. Call us on 0808 239 1525 to speak with one of our friendly care advisors who will provide information, guidance and advice on your care options.

Or to find the nearest Prestige Nursing & Care service to you, use the search function on our website.

HOW QUICKLY CAN MND CARE BE SET UP?

Our responsive and reliable local care at home service means we put care and support in place rapidly, and in many cases within 24 hours. We are providing a fully managed care and support service in over 30 locations in the heart of communities across England and Scotland. Our experts local to you organise care packages quickly, working in collaboration with local healthcare professionals who are involved in your care.

WHAT DOES A MND CARER DO?

Your carer supports you with a range of daily activities designed to enhance your independence and quality of life, including discreet personal care, light housekeeping, cooking and meal planning, medication management and accompanying you to activities or appointments.

WILL I HAVE A REGULAR CARER?

Yes. As part of our considered care planning process we take time to match a team of carers that best meets a clients’ specific needs. We ensure the care team has the skills and experience to meet your needs, but we also make sure they share similar interests, hobbies and values.

Rest assured that you or your loved one will receive care all year round from a team of well-matched, competent and compassionate carers who truly understand how you wish to live your life. We know our approach provides a consistency of care and leads to a stimulating and enjoyable life for our clients.

WHAT IS A MND CARE AND SUPPORT PLAN?

A MND care and support plan is a written statement created by our experienced registered nurse following our thorough assessment of your needs. It outlines all your specific care needs but also covers all your choices and preferences in how you live your life.

The care plan identifies specific care and support tasks involved in your care detailing when, where and how they should be carried out and by whom. It ensures you get the right care, in the right time and in the right place – your own home. Our registered nurse will conduct a comprehensive review of the plan working with your care team to ensure it always accurately reflects your needs and you achieve your outcomes.

HOW MUCH DOES MND CARE COST?

The cost of MND care is dependent on the level of care and support you require. If you are receiving our hourly care at home service the overall cost will be determined by the number of visits and frequency of visits to you at home.

Our experts will conduct a comprehensive assessment of your needs at your home, or in hospital if you are awaiting discharge to truly understand what you need and therefore how much care at home will cost.

You may be entitled to either healthcare funding, social care funding or Government funding to contribute to the cost of care. If you are faced with having to finance your own home care (known as self-funding care), there are initiatives available to you, including care fees, annuities or equity release schemes that could provide the funds you need for your care and support.

USEFUL RESOURCES

There are several organisations and charities that support those who are living with motor neurone disease, including the Motor Neurone Disease Association, the Brain and Spine Foundation and the Brain Charity.