Does a person living with TSC have a normal life expectancy?

TSC impacts everyone living with the condition very differently. This means that determining the life expectancy of someone with the condition is extremely difficult. For some people who live with TSC, the condition will have no impact on their life expectancy compared to those without the condition, whereas others may be affected by TSC in a way that shortens their expected lifespan.

If you have questions about whether your TSC (or a loved one’s) will affect life expectancy, you should speak to your NHS TSC clinic, or any clinicians who have treated and monitored you for the condition.

Lifelong monitoring and surveillance of the impact of TSC on individuals can help to ensure that a person living TSC is receiving the level of care that they deserve.

With every passing year, research into TSC uncovers further things about the condition and how it affects people. The more we learn about TSC, the greater the likelihood of ensuring that everyone with TSC has a normal life expectancy.

Why planning ahead for end of life is so important

Talking about and being practical about end of your life planning can help to make sure that loved ones and professionals understand and respect your wishes after you’re gone. When planning for the end of life of a loved one, it also helps to make things clearer and easier around their care needs.

End of life planning can also help to ensure that any dependents (like a child, sibling or partner) are safe and taken care of after your death – whether this is financial (such as funeral expenses) or specific care considerations for someone under your care (such as someone with TSC and support needs).

Although it can be difficult to think about, or to get started, many find that planning ahead for end of life gives peace of mind, for individuals but also entire families.

Planning as a carer for your own end of life

Many people in the TSC community are not only family members or loved ones to people living with TSC, but are also the person’s carer. Securing long-term care for the person that you look after if you were to no longer be around can be a significant and long-standing concern.

According to the charity Sense, 1.7 million disabled people are supported by their friends and families. Yet, there is no plan in place for 75% of the disabled people for if a day came that support was no longer available from friends or family.

The TSA strongly recommends that individuals and families proactively plan for such an occasion, to ensure that any required care continues for the person living with TSC and to also put the mind at ease of the carer and wider family.

As part of their ‘When I’m gone’ campaign, Sense has developed an excellent guide on planning long-term care and support for disabled adults and their families.

Setting up a Will or Trust

A Will is a legal document outlining how you want your affairs, assets and other issues dealt with after you are gone. A Will might include things like the distribution of possessions or funeral arrangements, as well as inheritance and financial matters.

A Trust is a legal document where a person or people are given the right to hold and manage listed assets for a specific purpose or person. In the TSC community, trusts can be particularly important for people who act as carer or guardian for someone with the condition, as it ensures that assets (financial or otherwise) can be managed on behalf of this person – for example, a Trust could be setup to ensure that money continues to be used to pay for a loved one with significant support needs to live in residential care.

Although Wills and Trusts are similar, setting up a Trust for a specific purpose (such as use of your assets for the care of someone living with TSC) ensures more legal protection and guarantees that your assets will be used for this purpose only.

As part of your Will, you may wish to arrange for the legacy gift to us. A legacy gift is when a person generously decides to give to us at the end of their lives, with the gift usually outlined in their Will. The impact of donations through a person’s Will to the TSA cannot be underestimated, funding a high proportion of the work that we do to support people living with TSC.

Mencap offers a guide on Wills and Trusts that is focused on families who have learning disabilities. Their resources cover the finer details of both documents, including guardianships and the care of loved ones.

Power of attorney – giving someone the right to make choices for you

Power of attorney is a legal document that says that one or more people are allowed to make decisions on your behalf (or to help you to make decisions). You might want a power of attorney in case you are no longer able to make decisions yourself, such as if you have an accident or become ill.

Handing over control of your affairs to someone else can feel difficult, but there are strict rules that determine how and when it can be used. Once signed, a power of attorney does not come into effect until they are needed.

You can choose to make more than one type of power of attorney, but you must make them while you still have mental capacity.

There are fees attached, but if you are in receipt of certain means-tested benefits you may not have to pay anything. If your income before tax is less than £12,000 a year, you’ll only have to pay half.

More information about power of attorney can be found on the UK Government website, which also covers fees and fee exemptions.