Where to start to access help

Lorimay 2 years ago

1 reply

My father has terminal pulmonary fibrosis and is deteriorating faster than we anticipated, think the fact that we lost my brother last year ages 53 with same condition,they are struggling financially and mum is not in best of health , the rest of us siblings are worried that if we don’t get them some help , ideally someone who can sit down face to face with them and explain what benefits / social care help they are entitled to , that they will both become far worse and dad won’t last the year … it’s so frustrating not Knowing where to go for help

Elin 2 years ago

Hi Lorimay,

Welcome to the Marie Curie Community and thank you for sharing your experience with us and others. We are sorry to read of your father’s diagnosis and the recent loss of your brother. It sounds like it has been an overwhelming time and understandably, you and your siblings want your parents to receive the support they may be eligible for.

It may be helpful to reach out to the local authority to request a care needs assessment. A care needs assessment is carried out by social services to find out what help and support the person needs including home adaptations, equipment and help in the home. As your dad’s main carer, your mum should be entitled to a carer’s assessment. This assessment will look to support her including equipment, financial support and respite from caring responsibilities. If you would like to find out more information, our webpage can be found here: https://www.mariecurie.org.uk/help/support/terminal-illness/care-needs/social-care

It may also be helpful to discuss nursing care and support options with your father’s GP. We have some information on our website about how to access nursing care and the professionals that may be involved below:

·         https://www.mariecurie.org.uk/help/support/terminal-illness/care-needs/nursing-and-personal-care

·         https://www.mariecurie.org.uk/help/support/diagnosed/practical-emotional-support/people-involved

Here on the Support Line while we are not benefit advisors, we can provide information about benefits. There will hopefully also be local advice services in your area, such as Citizen’s Advice or, depending on your parents age, Age UK may also offer benefit advice. Your local advice services can be found here:

·         https://www.citizensadvice.org.uk/about-us/contact-us/contact-us/search-for-your-local-citizens-advice/

·         https://www.ageuk.org.uk/services/in-your-area/

If useful, Turn2Us are also an organisation that can help to find local advisors on benefits and other practical help. Their advice finder can be found here: https://advicefinder.turn2us.org.uk/

If you would like to talk more about your experience, our Marie Curie Community is your safe space, to share as much or as little as you wish and to ask any questions you may have. Hopefully others here on the Marie Curie Community can share their experiences and insights, perhaps talk about ways in which they managed similar situations.

Our Support Line is also here for you and if you would like to speak with one of our team with any questions or simply for a listening ear, we are on Freephone 0800 090 2309.

Take care,

Elin - Support Line Officer