Participating Project

Project information

12 Weeks of Specialist Nursing Care

The J’s Hospice provide a unique community based service for patients aged 16-40 transitioning from a children’s hospice, or diagnosed with a life-limiting illness. This is filling a large gap in the health service, as neither children’s nor adult hospices are able to meet their needs effectively

ongoing

Charity information: The J's Hospice

The J's Hospice logo
  • Need

    Need

    Our Specialist Nurses manage a regime of palliative care services that are young adult focussed, ensuring the patient is at the centre of the decision making by : establishing a bespoke care plan tailored to their needs; drawing together the clinical, psychological, educational, social and spiritual needs not only of the patient but also of the family and carers; and liaising with local Hospital Consultants, Specialists, GPs, Social Services, Special Needs Services and Community Care Providers

    Solution

    The J’s Specialist Nurse (JSN) will offer hospice and respite care services in the home, to maximise quality of life, health and independence. The Specialist Nurse will deliver significant interventions and symptom control, avoiding distressing hospital admissions. They will assist with patients’ Preferred Place of Care choices, focusing on the specific needs of young adults with complex long term conditions, with the skill and specialist knowledge not found anywhere else in the sector

  • Aims

    Aim 1

    Young adults will become more independent and feel more in control of how they live their lives

    Activities

    » Our JSN’s help find opportunities for education, and discussions around Preferred Priorities of Care, Mental Capacity Act & End of Life Care
    » Our in house social worker works with each young person to assist in obtaining benefits and entitlements if required
    » Due to the nurses’ expert knowledge we will identify and manage changes in patients’ conditions thereby supporting the young person to remain at home

    Feedback from patients, family and health professionals through regular surveys and face to face assessments will show improvements to independence and well-being


    Aim 2

    Patients will have more opportunity to join in activities and feel part of the family & community

    Activities

    » We develop personal care plans for a range of socialisation opportunities for patients eg trips to the cinema, seaside, shopping trips etc.
    » We run “Inspire!” groups where patients meet for themed days with a range of different activities, entertainment and a chance for social interaction
    » JSNs support two local day hospice groups that assist in developing both health and community life skills

    Feedback from patients and family via surveys plus focus groups to ensure the activities offered at Inspire! meet the needs of our patients. Monitoring of attendance


    Aim 3

    Our young adults will be able to fulfil some of their life ambitions and feel motivated and happier

    Activities

    » Our JSNs help find opportunities for education, and assist with goal setting and developing personal care plans to meet these goals
    » JSNs work with each young person to develop personal care budgets to facilitate meeting life goals
    » JSNs provide a range of socialisation opportunities for our patients both individually (eg trips to the cinema) & peer group activities

    Via feedback from patients, family and health professionals through regular surveys regarding quality of life and emotional well-being of patients and their family groups


    Aim 4

    Young adults and their families and friends will be better equipped to face and manage the future

    Activities

    » Our JSNs help find opportunities for education, and discussions around Preferred Priorities of Care, Mental Capacity Act & End of Life Care
    » JSNs support transition from children's to adult services when patients reach the age of 16, addressing health, education and social care needs
    » JSN's provide psychological, emotional and bereavement support for the wider family and friends of patients facing life-limiting conditions

    Reduction of unnecessary hospital admissions, monitoring of advance care plans completed, regular monitoring demonstrates improved symptom management


  • Impact

    Impact

    The project will enable more patients to self manage through better understanding of their conditions, thereby gaining greater independence and control of their daily living. Monthly holistic assessments of physical, psycho-social, emotional, spiritual, educational and socialisation needs plus 6 weekly evaluations of therapies and ongoing tracking of hospital admission avoidance etc. will show long-term improvements for patients

    Risk

    25% of our specialist palliative care services cost comes from statutory sources. We have a small but very active fundraising team working in the Community, Corporate and Individual Giving areas. The support of external organisations is crucial to maintaining and expanding our service.
    Difficulty recruiting such specialised clinical staff means we must work hard to retain them - our staff are very well supported with regular training, external supervision and confidential counselling services

    Reporting

    We have an active database of supporters who we are in regular contact with through newsletters. In addition we regularly provide updates on our services through our website and social media

  • Budget

    Budget - Project Cost: £12,876

    Loading graph....
      Amount Heading Description
      £12,876 salary Twelve weeks salary costs for a J's Specialist Nurse
  • Background

    Location

    The community service was started in 2010 by a local parent recognising the gap in service between children's and adult hospice care. The J's Hospice provides age-appropriate support to any young adult and their family between the ages of 16-40 with a life-limiting or life-threatening illness across Essex who meets our criteria. The majority of this complex and often expensive long-term care is delivered within the patient's home as well as in social groups around the county

    Beneficiaries

    Young adults with life-limiting or life-threatening conditions and their families where:
    Curative treatment can fail eg cancer or irreversible organ failure;
    Premature death is inevitable eg cystic fibrosis;
    Treatment of progressive conditions is only palliative and often long-term eg muscular dystrophy;
    Conditions are irreversible causing severe disability and often premature death eg cerebral palsy;
    Specialist palliative/complex care, nursing, support and/or end of life care is needed

  • Why Us?

    Why Us?

    CQC regulated, we are the only community-based hospice in the UK offering age-appropriate care to young adults with life-limiting and life-threatening illnesses at home. We currently look after almost 100 patients and their families and know that up to 350 need our support, which no other organisation is in a position to provide as our skilled service and specialist knowledge is not found or duplicated in any other local hospice provision or community service including district Nurses and GPs

    Read more about the Charity running this project.

    People

    Bev Barclay

    Head of Clinical - she is widely recognised for her young adult palliative care experience, a driving force for expanding this type of care in the UK

    Caroline Hare

    The Senior Nurse will line manage and support the J's Specialist Nurse on a day to day basis