CLICK THE DIFFERENT SUBJECT TITLES BELOW TO FIND OUT MORE ABOUT EACH.

Adapting your Home

Depending on the type of rare disease, it may be necessary to adapt your home. For some people these are quite small adaptations involving handrails or a small ramp (minor adaptations), but for others it can involve a more substantial change to your property (major adaptations). It may be possible to obtain help towards the costs of the adaptation.

Benefits

Many rare diseases are life-long conditions and can affect your life in different ways. If it is your loved one who has the rare disease, you may have found that you now spend a substantial part of your week caring for them. Benefits exist to support you with those challenges but accessing them can be time-consuming and confusing to understand. There can be strict criteria and you will need to gather evidence to support your application.

Dentistry

Although many adults and children with rare diseases and conditions attend a regular dentist, there can be additional challenges. Unless your rare disease is one of the more common ones, they may never have treated another patient with the same condition. Not all high street dental practices are fully accessible to those with mobility disabilities and some dental practices will have experience with learning disabled patients and others will not. Additionally, some rare conditions are associated with particular issues in dental and oral health and development and may require specialist care.

Local Offer

Some congenital or child-onset rare diseases and conditions can mean that your child has special educational needs or is disabled. Your Local Authority is responsible for providing a range of services.

Power of Attorney

‘Capacity’ or ‘mental capacity’ is important for decision-making. A person’s mental capacity can remain consistent, fluctuate or deteriorate. They may have the capacity to make some decisions and not others. When we talk about capacity in this context it is about assessing mental capacity to make choices and not about preventing young adults from making choices that we as parents do not feel are wise.

Respite Care

Taking time for yourself to rest and recuperate can be challenging for carers. It can be hard to let go and let someone else take over for a while. Sometimes people tell us they feel guilty for needing respite. It is completely natural to need to take a break and have time for yourself. Providing day-to-day care as a partner or parent can be tiring and it is important that you can take a break from caring not only to stop you becoming exhausted and run down but because you have your own life and finding balance is beneficial for everyone. It is important to recognise that caring draws on our physical, mental and emotional reserves and if we don’t keep these topped up then caregiver strain can set in.