LIVING WELL WITH MUSCULAR DYSTROPHY, FOR ALL OF LIFE

At Prestige Nursing & Care we believe that those living with muscular dystrophy should be able to live a fulfilled and healthy life with the right support in place, tailored to their individual needs.

As an established provider we have been supporting individuals who require muscular dystrophy care to have an improved quality of life in their own homes and communities for over 75 years. We have been 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 MUSCULAR DYSTROPHY CARE

We know through our experience of supporting thousands of people and their families, that faced with the prospect of needing long-term care and support for muscular dystrophy that most people would prefer to stay in the safety, comfort and familiarity of their treasured home and not endure the disruption caused from a move away.

For many a move from home can cause much upset, worry and for some confusion. Having routines imposed on how you live, leaving your loved one, feeling isolated from family and friends or your local community are all common concerns experienced by those facing a move into a care home, specialist care setting or facing a prolonged stay in hospital.

Staying at home with the muscular dystrophy care you need means that you can continue to live life your way, whilst benefitting from one-to-one care provided by a competent and compassionate carer.  They will focus on providing care and support that enriches how you live, so you can have an improved quality of life with enhanced well-being.  Care at home enables you to remain independent and live your life with choice, whilst supporting you to successfully meet development milestones and for children and young adults, educational achievements.

WHAT IS MUSCULAR DYSTROPHY?

Muscular dystrophy is a group of genetic disorders that lead to progressive and irreversible weakness and loss of muscle mass resulting in severe muscle weakness and other related problems. It is progressive, so individuals may pass through different stages of the condition which require a different approach to types of treatment and support.

There are many types of muscular dystrophy each with their own cause.  Whilst symptoms can become evident in childhood, others are not apparent until middle age or older.  As it is a genetic condition those with muscular dystrophy in the family are a greater risk of developing it.

According to Muscular Dystrophy UK, the leading charity supporting those living with muscle wasting conditions there are over 70,000 people in the UK living with muscular dystrophy.   Symptoms vary depending on the type of muscular dystrophy you are living with, but common symptoms include difficulty walking, trouble breathing, a curved spine, restriction in joint motion and heart and organ problems.

Here we explore the most common forms of muscular dystrophy:

Duchenne type muscular dystrophy

This is the most common form of muscular dystrophy and is most common in boys.  Girls can be carriers but will only be mildly affected.  Symptoms will typically appear in early childhood and include falling frequently, difficulty jumping or running, trouble with rising or sitting up, larger than normal calf muscles, walking on toes, muscle stiffness and pain, learning disabilities and delayed growth.

Becker muscular dystrophy

Becker muscular dystrophy is similar to Duchenne muscular dystrophy, but signs and symptoms tend to be milder and progress more slowly.  Also, symptoms do not typically begin until the teenage years, but may occur when a person is in their mid-20’s and sometimes later.

Congenital muscular dystrophy

Congenital muscular dystrophy occurs between birth and the age of two.  Parents of a child will become aware that motor functions and muscle control are not developing normally or in the way they should.  Symptoms include poor motor control, muscle weakness, deformities in the feed, swallowing problems, inability to stand without support, speech and vision impairment and respiratory problems.

Myotonic dystrophy

Myotonic dystrophy causes myotonia which means a person is unable to relax muscles after they contract and can affect the central nervous system, heart, thyroid, eyes, facial muscles and gastrointestinal tract.

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OUR APPROACH TO MUSCULAR DYSTROPHY CARE AT HOME

At Prestige Nursing & Care we provide a care and support package that enables you to live an enriched and fulfilled life in the safety and comfort of your own home.  No matter what age you are the muscular dystrophy care and support we provide will be guided by you tailored to your needs, giving you choice over how you live your life and the support you want. Our focus is for you to have as much enjoyment in life and our carer will support you with a care plan for muscular dystrophy that means you can enjoy activities and as much socialisation as you wish.  They will actively encourage you to learn new skills and engage new hobbies to make life stimulating and meaningful.

We work collaboratively with our clients and their families to develop a thorough care and support plan that accurately reflects a person’s holistic needs.  We also adopt a partnership approach to working with local authority partners, NHS services, multidisciplinary teams, therapists and other community bodies involved in a person’s care.  This means we are well-informed so we can provide continuity of care ensuring the right care is in place at the right time, whilst responding efficiently to changing needs and strengthening care provision when required.

Our carers will assist you with activities of daily living, ensuring your mobility needs are met including supporting you to use manual and power assisted wheelchairs.  They are trained to use ventilator systems to support breathing and respiratory function should you need this type of care.  They will be trained to use any equipment you need to increase your quality of life.

COMPETENT AND COMPASSIONATE MUSCULAR DYSTROPHY CARERS

When you choose Prestige Nursing & Care you can be reassured that the carer who cares for you or your loved one is experienced and 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 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 can 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.

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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, that is focused on ensuring the best possible care experience for our clients and their families.

Our nurses work in partnership with our care co-ordinators, 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 on-going advice and continual support to ensure they feel reassured about the service we provide.

Giving Chris his life back with muscular dystrophy care at home

Chris is a 43-year-old man and has been living with muscular dystrophy for many years

Giving Chris his life back with muscular dystrophy care at home

Chris is a 43-year-old man and has been living with muscular dystrophy for many years.

Recently his lung collapsed and following tracheostomy he required 24-hour care.  Previously his mother and PA were able to care for him, but now that complex nurse-led care was needed around the clock it was impossible for them to provide the level of support he required.

Chris was determined to return home from hospital and live as independently as possible. His critical medical condition gave him bouts of anxiety that impacted how he felt, so he needed to trust his care team.  He worried about the loss of personal space from 24-hour care arrangement, so it was key that Chris and his carers got on well so they could be honest with each other about the level of care he wanted.

Prestige responded quickly with a team of carers to support Chris that would best meet his needs.  So that Chris could feel reassured and had continuity we happily employed Chris’ live-in PA of 8 years James, as part of the team. James was medically trained at the hospital with additional training from Prestige.  We provide another carer to deliver care in the morning and evenings, as well as a carer through the night to attend to his medical and personal needs.  When James takes a break, we also provide live-in care for the periods that James is away.  This approach enabled Chris to have control over his care team which was very important to him.

The complex care provided by the team at Prestige to support his muscular dystrophy symptoms included tracheostomy care, BPAP, suctioning, cough assist, ventilator and nebuliser support, handling and hoisting, as well as personal care and domestic care of his home.

Chris said: “The Prestige team are very good at judging characters – always putting the right people in for me – I really trust them. They give me much-need emotional as well as practical support.  My views are completely respected. I feel understood, my carers are more like friends – the trust and family feel mean absolutely everything to me. Prestige has given me back my independence. That’s priceless. I didn’t think what I have was possible.”

Chris now lives a fulfilled life at home with his dedicated team of carers and his mother is able to enjoy her life again, free from worry knowing that he is in safe hands. The outcome for Chris is positive. He leads an active social life and takes pride in his charity work as a befriender and tutor, supporting people with long-term health conditions.

Claire, Chris’ mum said: “This is my first experience of care. I cannot fault it.  I don’t have to worry now. The carers are all so well trained and they’ve always got time.”

The team at Prestige work in partnership with the local Clinical Commissioning Group that recommended Chris, who review his care plans. Chris chooses to have the district nurse change his tracheostomy once a month, as he likes the medical contact. He also has regular contact with the respiratory outreach nurse.  James says “they rely on us because we are with Chris every day. We’re all part of the same team, it’s like a jigsaw puzzle, it all just slots together”.

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

HOW WE PROVIDE CARE AT HOME FOR THOSE LIVING WITH MUSCULAR DYSTROPHY

Our trusted and established care at home service can be provided in the following ways for someone living with muscular dystrophy:

  • Hourly care or visiting care, as it is sometimes referred is for those who need care and support with tasks of daily living or clinical care at certain times during the day. Care at home can be provided from a 30 minute visit, to as many hours/visits throughout the day you require, one day or several days of the week depending on your care and support needs. For those who have 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) from The Good Care Group.
  • 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.
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CARE MANAGEMENT LOCAL TO YOU

Our responsive and reliable muscular dystrophy care service local to you means we can put care and support in place quickly and in many cases within 24-hours.   Depending on your needs a comprehensive assessment will be conducted by either a registered nurse or our local care expert.  We can conduct the assessment at your home, in hospital or in any specialist care setting if you are awaiting discharge back to your own home, enabling a plan of care and support to be developed that meets all your needs.

Our approach to care planning, whether it is for an hourly care service respite care or a permanent live-in care arrangement 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 on-going support, giving you peace of mind that you or your loved one is receiving the very best home care.

QUALITY ASSURANCE THROUGH REGULATED SERVICE PROVISION

Prestige Nursing & Care is not an agency.  Unlike a home care agency, we provide a fully managed and regulated care at home service, which means our clients, their families and our professional partners can be reassured that the care and support we provide those living with muscular dystrophy 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 all our services in Scotland have been awarded a five-star rating.

Our accredited service for complex care, which meets local and national quality standards and ensures a consistent approach to the care we provide, provides peace of mind and reassurance that our service if of the highest quality.

COST OF MUSCULAR DYSTROPHY CARE

The cost of muscular dystrophy care is dependent on the level of care and support you require.  If you are receiving our hourly muscular dystrophy 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 of your needs at your home, or in hospital if you are awaiting discharge to truly understand what you need and therefore how much muscular dystrophy care at home will cost.

We know that our cost of muscular dystrophy 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 muscular dystrophy home 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.

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RESPONSIVE LOCAL TEAMS WITH NATIONWIDE COVERAGE

We are providing care and support to those needing muscular dystrophy care 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 can put care packages in place quickly, working in collaboration with local healthcare professionals, multidisciplinary teams, therapeutic care providers and other community support services.  We know this holistic approach ensures our clients get the best out of life, for all of life.

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USEFUL RESOURCES

There are several organisations and charities in the UK that support those who are living with muscular dystrophy, including Muscular Dystrophy UK, the Harrison Fund, Duchenne UK and the Muscular Dystrophy Association.

We are here to take your call and will provide impartial support and guidance – contact our friendly care experts today to discuss your muscular dystrophy care and support needs.


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