Supporting families of complexly poorly children and families of child loss

Supporting families of complexly poorly children and families of child loss

Support for families of complexly poorly children

We offer support to children and young people with complex health needs. This complex illness support extends to their immediate family including parents and siblings.

Every story is different and we offer both practical and emotional support and promise to walk side by side with a family for as long as we are needed. This includes delivering a bespoke and tailor-made complex illness support package for each family and guidance to help them navigate their journey.

We also provide fun and therapeutic activities and the chance to make magical memories in a safe and accessible space.

Please take a look at some of the services we provide below:

Peer Support Groups

Support Groups

Our peer support groups help to bring children and parents together so that they can share similar experiences. These groups help families to feel at home in a safe space and allow them to feel accepted and understood.

Talking Therapies

Counselling & Talking Therapies

Talking therapies can help families to share fears and anxieties and work out how to deal with negative thoughts and feelings.

Family Fun Days

Activity & Family Fun Days

We organise a range of family fun days throughout the year to help families create magical memories in an accessible space where then can be celebrated for being unique.

Wellbeing and Holistic Support

Wellbeing Support

We offer a range of wellbeing and holistic support sessions throughout the year, including reiki, yoga and meditation. These all help families to relax and recharge.

Short breaks and day trips for families to make memories

Short Breaks & Day Trips

We know how important having space to relax is for families who can live with extra pressures. We arrange both breaks and day trips to allow families to make memories.

Hydro-Pool Swimming Sessions

Swimming Sessions

Our new retreat wing is due to open soon and we have a new hydro-pool which will allow poorly children to experience swimming.

Social Welcare

Practical Advice

We also offer practical advice from trusted professionals and solicitor such as help navigating the social welfare system. This includes offering advice on benefits and legal advice.

Who we support 

– We support parents, siblings and the poorly child 

Our criteria for taking new referrals are that the child must be aged between 0-25 years old and has been diagnosed with a life-limiting condition according to NICE Guidelines:

Group 1 

Life threatening conditions for which curative treatment may be feasible but can fail. (E.g. cancer, irreversible organ failures of heart, liver, kidneys.)

Group 2 

Conditions where premature death is inevitable. (E.g. cystic fibrosis)

Group 3 

Progressive conditions without curative treatment options. (E.g. Batten disease, mucopolysaccaridoses, muscular dystrophy.)

Group 4 

Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death. (e.g. multiple disabilities such as brain or spinal cord injury.)