Bereavement support and palliative care

Palliative care is about promoting the best possible quality of life and care for every child with a life-limiting condition and their family

Respectful and compassionate care for a child or young person and their family members at the end of life, ensures their physical, psychological and social needs are met.

For many children with life-limiting conditions, their condition can decline at any time. For some their passing can be quite sudden for others it can be slower, allowing for better acceptance, planning and goodbyes.

As a parent, you only want the best for your child to know they haven’t suffered and were not in pain. Good practice on behalf of the professionals involved is vital as well as the gathering of information, building relationships, trust and confidence. It is important that families receive full care and support during this time that they are in full receipt of the facts and information in order that informed choices and plans can be put in place without any regrets or questions.

Our support team is here for the entire family: parents, grandparents and siblings, over the phone, at any time on 0345 389 9901.

How we can help

If your child needs hospice care you can contact our support team at any time for advice and help with this. 

Palliative care is about promoting the best possible quality of life and care for every child with a life-limiting condition and their family.

We offer confidential support. Our qualified support and advocacy officers are here for you to offer a confidential supportive ear.

Contact the support and advocacy team

Our helpline is open 9-5pm Monday-Friday: 0345 389 9901 or you can email: advocacy@mpssociety.org.uk
Out of hours support line: open 5pm-10pm Monday-Friday and weekends: 07712 653 258 

We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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MPS Society, MPS House,

Repton Place, White Lion Road,

Amersham, Buckinghamshire,

HP7 9LP, United Kingdom

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Registered Charity No.1143472 & SCO41012. Registered Company No. 7726882.

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© 2020 Society for Mucopolysaccharide Diseases