If you or a family member has a mitochondrial disease, you might be feeling particularly vulnerable in the coronavirus (Covid-19) crisis. On this page you can find links to information that may be helpful to you at this difficult time. The information here is for reference only. For full advice about how to protect yourself and others from coronavirus, please refer to NHS and government guidelines.
Lily Helpline - 0300 400 1234
If you have trouble finding the support you need, you can call us and we'll do our best to assist you. All our team members have experience working with people with mitochondrial diseases, and are familiar with the sorts of challenges you may be facing. Calls are kept strictly private and confidential, and we will not share any personal data without your consent. Please note that we cannot give advice on personal medical issues over the phone. If you have an urgent medical issue, call 999.
If your situation is non-urgent (for example if you have mild coronavirus symptoms), call the NHS helpline on 111. In the event of a medical emergency, call 999. For general advice on coronavirus health, including what to do if you have symptoms, and shielding for extremely vulnerable people, refer to the NHS website.
If you'd like us to contact you with any health updates that affect people with mitochondrial diseases, register with us by calling 0300 400 1234 or emailing [email protected]
Emotional Health & Wellbeing
Prioritising your mental health is important at this time. If you're struggling emotionally, need advice about mental health, or just would like someone to talk to, the following charities can help:
The Wellcome Centre for Mitochondrial Research has published some useful guidelines on how to look after your psychological health during the coronavirus crisis. The NHS has some useful mental health information to help with staying at home.
The Lily Foundation offers specialist benefits and employment advice for people affected by mitochondrial diseases. If you would like to speak to an advisor, please email [email protected] or phone 0300 400 1234 to arrange a consultation.
If you have been affected by coronavirus and are unable to work, you might be entitled to sick pay or Universal Credit. Government advice on this is being updated day by day, so it's worth checking to see if you are entitled:
Supermarkets and online delivery firms are making more slots available to people with disabilities, those over the age of 70, and those self-isolating due to underlying health conditions. Check your local supermarket's website for details.
Some local restaurants, pubs, cafes and shops are providing extra delivery services, and volunteer groups are also being set up in local communities to help deliver supplies to those most vulnerable. Contact your local council or community centre to find out what's available in your area (see Community Support below).
Contingency Care Planning
Visits from people who provide essential support such as healthcare, personal support or social care should continue, but we realise there may be a disruption to your usual provision.
The charity Carers UK has useful advice for those caring for vulnerable people, including how to set up a contingency care plan in the event that your usual carers are unavailable. Their phone helpline is 0808 808 7777
It is important to stay in touch with friends, neighbours and family members if you are feeling vulnerable. Ask those around you for help, exchange contact details with neighbours, and take opportunities to chat when they arise (being sure to observe social distancing rules at all times). Contact your local council or community centre to find out what other support is available in your area. You can find you local council by entering you postcode here:
Medication normally dispensed from a hospital pharmacy may now be delivered to you by post. To arrange free delivery of your medication from your local pharmacy, contact one of the following NHS approved companies:
Please note these services are currently facing high demand, and may be subject to delay so please plan ahead where possible. Currently there are no shortages of critical medications, nor is this expected. While it's important to have adequate supplies of essential medications, we ask that patients avoid stockpiling to ensure that supply chains can service all patients.
Have we forgotten something?
If you have an urgent need that's not listed in the information above, contact us and we'll do our best to help. Call 0300 400 1234, or email [email protected]