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Muscular dystrophy care

Where do you need care?

We can provide care in your home anywhere in England & Wales

Live-in support for people with muscular dystrophy or spinal muscular atrophy

Muscular dystrophy and other muscle wasting conditions like SMA can affect approximately 1 in every 1,000 people across the UK. Even though such conditions are rare, we provide customers living with muscular dystrophy with support from professional carers.

A Helping Hands support worker can offer you support in the familiar surroundings of your own home, as well as advice and guidance for your treatment options.

We can provide you with specialist care if you or a loved one has a muscle wasting condition. Medical care doesn’t always have to mean a trip to the hospital. We can provide you with nursing led care for your condition, especially when you need regular treatments, mobility assistance or physical therapies. We are here to help you with continence care, cough assistance and bed turning. Specially trained Helping Hands carers can also provide ventilator care at home. Our carers will have regular contact with your doctor and other medical professionals that assist you to ensure that we provide you with treatment and care that is specific to your medical needs. We can help monitor and care through dysphagia and liaise with SALT team , likewise many customers need our support with their PEG regime.

If, due to scoliosis, you require corrective surgery, your Helping Hands carer can provide you with surgery aftercare in your own home, so that you can remain in familiar surroundings during your recovery. Your carer will help you and your family to cope with your aftercare, whilst constantly monitoring your other medical requirements.

But it’s not all about medical treatment. Our carers will concern themselves with your mental health and the emotional effects of living with muscular dystrophy. They can put you in touch with support groups so that you can discuss your health and the impact it has had with like-minded people who have experienced the same thing.

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My carer makes a huge difference to all areas of my daily life. He is always flexible and has built up a great working relationship with me.

Jonathan Gilmour

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Your carer will follow a personal muscular dystrophy and spinal muscular atrophy care plan

To ensure we are putting your medical requirements and your preferences first we will put together a detailed home care plan tailored to you which will include your medication and your mobility needs and limitations, plus your interests and hobbies. We do this to make sure you’re completely comfortable with the home care that we provide, your plan can always be altered if there’s an area of support that you require more or less assistance with. It is this level of person-centred care which means we can focus on the outcomes that you want to achieve and regularly review against them.

Page reviewed by Natasha Johnson, Clinical Nurse Lead on July 18, 2019

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