Navigating the complexities of paediatric palliative care and finding the right support for your loved one is an incredibly daunting journey that requires both expert guidance and a compassionate hand. In this guide, you will discover essential information regarding the services and support available through The Donna Louise: Hospice, helping you understand how to access care and prepare for the support your family truly needs. We are here to provide the clarity and reliable insights you require to feel more confident and supported during this challenging time.
The Donna Louise: Hospice, now integrated into the Douglas Macmillan Hospice, serves as a vital sanctuary in Staffordshire and Cheshire, providing specialist residential respite, palliative, and end-of-life care for children and young people up to the age of 25. By offering a 24/7 advice line at 01782 344300 and dedicated Family Liaison Nurses, the service ensures that families receive consistent, expert clinical and emotional support during the most difficult chapters of their lives.
Understanding the specialist services provided by The Donna Louise: Hospice
The core mission of the hospice is to improve the quality of life for children with life-limiting conditions through a holistic approach that includes palliative care, respite support, and bereavement services. This care is not restricted to a clinical setting; it extends to individual homes and the wider community, ensuring that families receive assistance where they feel most comfortable and secure.
Clinical and respite care expertise for families
Specialist care is delivered by a multidisciplinary team focused on alleviating symptoms and providing necessary breaks for primary caregivers through residential stays. For families referred to the service, a dedicated Family Liaison Nurse is allocated to act as a primary point of contact, helping to coordinate care plans and provide essential emotional support during the progression of an illness.
Therapeutic facilities and sensory environments for children
The physical environment of the hospice at Grace Road, Trentham, is purpose-built to foster comfort, play, and sensory development for children with complex needs. The facility features a multi-sensory room, a computer room, a soft play area, and a Jacuzzi, alongside a welcoming family room and garden space designed to allow families to create meaningful memories together in a safe, supported setting.
Eligibility criteria and accessing palliative care pathways
Accessing the hospice services requires that a child or young person is aged between 0 and 25 years old and is registered with a GP within the Staffordshire or South Cheshire regions. The service is specifically designed for those diagnosed with recognised life-limiting or life-threatening conditions, including muscular dystrophy, epilepsy, cystic fibrosis, severe metabolic disorders, severe cerebral palsy, and complex organ failure.
Referral policies for end of life care
New referrals for individuals aged 18 and over are accepted exclusively for the purpose of end-of-life care, ensuring that resources are prioritised for those at the most critical stages. Families seeking to initiate a referral should consult with their primary medical team, who can help navigate the clinical requirements necessary to ensure the child meets the criteria for specialised paediatric palliative support.
Practical preparation for your first meeting
When you prepare for your initial consultation with hospice staff, being organised can significantly reduce your anxiety. Have you ever felt like you’re carrying the weight of the world on your shoulders? Taking these small steps can help lighten that load:
- Bring a folder containing the most recent medical reports and medication lists.
- Write down a list of your child’s daily routines and sensory preferences.
- Prepare a list of questions regarding the transition between hospital and hospice care.
- Keep a contact list of your current GP and specialist consultants.
History and institutional merger of The Donna Louise: Hospice
The legacy of The Donna Louise began in 1997, following the death of Donna Louise Hackney at age 16, which inspired the founding of the charity in 1999 and the subsequent launch of a community nursing team in 2002. The purpose-built hospice building in Trentham opened in August 2003, and the service gained official registration with the Care Quality Commission in 2011, solidifying its role as a pillar of support for the region.
Integration with Douglas Macmillan Hospice
In March 2021, The Donna Louise Children’s Trust officially amalgamated with the Douglas Macmillan Hospice, also known as Dougie Mac, to create a more resilient, integrated network of care across the county. This transition, facilitated by the firm Knights and led by management figures such as David Webster, Hayley Goodwin, and Jenny Hampson, ensures that the specialised paediatric services continue to thrive under a unified organisational structure.
Contact information and administrative office details
For administrative queries or to visit the site, use the following contact channels. Remember: Always keep the 24/7 Advice Line number stored in your phone, as having immediate access to professional support is your right as a caregiver.
| Service Type | Location / Contact |
|---|---|
| Hospice Site | 1 Grace Road, Trentham, ST4 8FN |
| Adult Services | Blurton site, Stoke-on-Trent, ST3 3NZ |
| General Enquiries | 01782 654440 |
| 24/7 Advice Line | 01782 344300 |
Supporting the hospice through donations and volunteering
Maintaining these essential services relies on the ongoing generosity of the public. If you are wondering how best to contribute, consider these practical options:
- Financial Donation: Use the official website or JustGiving to provide one-off or recurring support.
- Fundraising: Register your own event via the “Pay My Fundraising” page to actively involve your community.
- Volunteering: Offer your time at the shop (age 14+) or within the hospice (age 18+) to provide much-needed human connection.
Many families wonder how to handle the emotional toll of caregiving, but in my experience, taking small, scheduled breaks is essential for your own well-being. Navigating the care plan for a loved one is a unique journey for everyone – giving yourself permission to feel is the first step.
Frequently Asked Questions
Can siblings access bereavement support at the hospice?
Yes, the bereavement care services are designed to support the entire family unit, including siblings who are processing the loss of a loved one. You can contact the team directly to arrange age-appropriate counselling or group support sessions.
Does the hospice provide transport for medical appointments?
While the hospice focuses on residential and community-based care, your allocated Family Liaison Nurse can help you navigate local transport options and health service resources. It is best to discuss specific transport needs during your initial care assessment.
Are there religious or spiritual support services available?
The hospice respects the diverse backgrounds of all families and provides space and support for spiritual reflection. You are encouraged to speak with your care coordinator to integrate your specific cultural or spiritual preferences into your child’s care plan.
How can I provide feedback on the care my child received?
Feedback is highly valued and helps the organisation maintain its standards under the Care Quality Commission registration. You can submit your comments via the official email address or by speaking directly with a member of the management team at the Trentham site.
Professional guidance and early engagement with the hospice team provide the stability necessary to manage complex health needs effectively. Always keep the 24/7 advice line number saved in your contacts to ensure you have immediate access to expert support exactly when you need it most.
