Rare Diseases Day 2019



Offering Support During Rare Diseases Day

 

Rare Diseases Day falls on 28th February in the UK this year and is a day to raise awareness and further understanding of some of the lesser known illnesses affecting individuals across the UK. This year, the theme for world Rare Disease Day is ‘bridging health and social care’. With reports showing that 80% of patients with rare diseases find it difficult to care for themselves and compete basic tasks, the need for daily assistance from family members and caregivers is high.

This year is the twelfth annual rare diseases day organised by EURORDIS, where every year, hundreds of patients and organisations around the world hold awareness-raising events for the cause. Rare diseases are any disorders or illnesses which affect a small number of the population, and often these can be isolating and lonely to live with, especially for older people.

The campaign targets primarily the general public and seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

With this year’s theme of bridging the gap between health and social care, we at Ashridge Home Care, as well as other care organisations around the world, want to help to offer support for individuals whose lives may be impacted by rare diseases.

For older people who are struggling with rare diseases which may be leaving them feeling isolated, they may find it difficult to complete daily tasks and this can become frustrating. They may require assistance in areas such as accessing treatments, getting to doctor appointments, doing paperwork and even getting around their own home. These are all areas which a carer can assist with.

Similarly to family members who can offer care to older relatives, older people can build strong relationships with their live-in carer and rely on them for support and assistance with their needs. For individuals who need specialist care and extra support, our carers are trained in assisting with complex health conditions. We believe that everyone is individual, and so everyone has a right to full support and dedicated care.

We’re not the only ones who want to extend this care to older people in the local area. There are many local charities who do great work in forming relationships between carers and patients and creating a community of support. Local organisation such as PSPA, based in Milton Keynes, are dedicated to aid people affected by rare diseases.

PSPA provide professional support to individuals and families affected by PSP or CBD throughout the UK. They offer support for individuals who are newly diagnosed, as well as those who have lived with one of the conditions for a while. Their dedicated care means that people who are suffering and isolated by a condition which may stop them from feeling heard can access the support and assistance they require.

On Rare Diseases Day this year and every other day of the year, we want to help in bridging the gaps in medical, social and support services, which is why this is a cause we’re so proud to get behind.

To find out more information on Rare Diseases Day and to find out about events in your area, check the website here.

For information on the services we offer at Ashridge Home Care and how we can help you or your loved one to access support, email info@ashridgehomecare.co.uk, call  01494 216532  or fill out the contact form below and we’ll get back to you as soon as possible.

Whilst you’re here, why not look at our other recent blog posts?

 

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Choosing live-in care is a huge decision and not something that you should take lightly. Some of these conversations can be tricky and it’s our job to make sure you feel as comfortable as possible. We are more than happy to visit you and your family at home to discuss your situation and consider the options available to you.
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