This should help to confirm that clear guidelines on social distancing have been put into place by the care provider, but not at the expense of caring for your loved one or in continuing to maintain a good quality of life for them.

It is reasonable to expect that staff will have completed some form of training, such as instructions on one-way systems in the facility, or minimising risks during direct care activities, such as bathing or clothing.

You may want to see if private testing is an option, or whether the provider is relying on NHS screenings.

Although you should expect cleaning regimes to be of the highest quality at all times, it is reasonable to ask whether additional cleaning rotas or external cleaning agencies are being recruited with the specific aim of helping to minimise the spread of covid-19.

It may not be a simple yes/no answer, as visits could perhaps be restricted or limited to allow for social distancing. There could also be restrictions on where a visit could take place, such as in a garden.

Some of the measures you might expect in care homes that are permitting visits include:

• Social distancing
• Only one visitor per resident
• Outdoor visits only (either in the care home garden, or an outdoor public space)
• PPE worn by visitors
• Visitor booking system

Care providers may be willing and able to offer contact through phone and video calls. However, we understand that for some people living with TSC and their families, video calls can be upsetting, such as if a loved one is non-verbal.

For some families and individuals living in residential care, something as simple as a wave through a window could make all the difference. It is therefore important to communicate with the care provider how you feel would be best for your family to keep in touch, whilst keeping safe.

It is reasonable to ask for and to be talked through the protocol(s) being used by the provide to decide on whether in-person visits are being permitted (and how they are happening). This may not only give you peace of mind, but could perhaps highlight areas for the provider to work on or reconsider.

Try and ensure that the provider agrees to give you regular updates as and when they are needed, so that you and your family can be confident and comfortable that you are up-to-date on the latest changes. This can help ensure that there are no difficult surprises and help to make any changes, which could be hard to hear, easier to deal with.

Asking this question can help ensure that you are doing everything that you can in partnership with the care provider, but also prompts the provider to critically evaluate their own work

If you have not received a notice of the decision to make changes to the care package, it would be useful to ask for this decision in writing and the reasons for it, alongside a copy of your loved one’s most recent needs assessment and care and support plan.

It is recommended that you have conversations regarding care packages over email, so that a paper trail can be maintained. You might also find it useful to give a deadline to receive a response. You may wish to use this letter, provided by Mencap, to request this notice in writing.

A care package should not be reduced without a needs assessment or support plan review. The recommended way to challenge any reduction in support is to request a copy of the completed needs assessment and the latest care and support plan, as suggested. If the changes to the care package mean that your loved one is no longer receiving the essential care that they were initially assessed as needing, then there is a strong argument that this could breach human rights law.