Children’s Specialist Palliative Care

The specialist children’s palliative care team (also known as the PATCH team) is part of United Lincolnshire Hospitals NHS Trust children’s community services, covering the county of Lincolnshire.

Who we are

The team is made up of a specialist palliative care nurse (team leader), health care/family support workers, a play specialist and a secretary. The PATCH team is part of the wider team consisting of the community children’s nurses, children’s Macmillan nurse and the specialist family support team.

The team follows the relevant professional standards, codes of ethics and ULHT hospital policies and procedures including:

Nursing & Midwifery Council – www.nmc-uk.org.

What we do

Palliative care for children and young people with life-limiting conditions is…

“…an active and total approach to care, from the point of diagnosis or recognition throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on enhancement of quality of life for the child/young person and support for the family. It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement.”

The PATCH team provides:

  • Nursing care and short breaks in the child’s own home or community setting for children with end of life/palliative care and/or life limiting illnesses with complex care needs
  • Symptom control care for those children requiring end of life care
  • Specialist and supportive care during end of life care
  • End of life care planning

We work closely with other members of the team and other agencies such as children’s services, Lincolnshire Safeguarding Children Board and Continuing Health Care.

The care provided is child-centred and flexible service to the child and family, to allow them to use their allocated time as they would wish. The aim of the service is to provide high quality short break care/palliative care to children whilst enhancing the quality of life for the whole family.

How we work

The service is intended primarily for those children needing end of life care and/or with recognised palliative care needs. Priority is always given to children requiring end of life care at home when additional support is given in accordance with family wishes. The referral form and criteria for the service will be provided for completion to professionals considering making a referral.

Each child is assessed against the criteria and according to their individual care needs, medical status and depending on other services already being accessed.

The palliative care specialist nurse (team co-ordinator) will visit the family once a referral has been received to assess the child’s needs. From the information obtained, along with additional information from the child’s parents/carers, medical/nursing records, the child’s eligibility for the service will be determined and the time to be allocated will be discussed and negotiated with the family. The time allocated can be used flexibly within existing resources and service demands to meet the child and family’s needs and wishes.

Staff are matched to work with individual children and receive training in moving and handling, basic life support, first aid and any other areas that are identified as necessary to meet the individual child’s care needs.

The children’s specialist palliative care nurse facilitates individualised competency based training and assesses the care team until they are familiar with each child’s needs and their specific nursing needs. Examples include:

  • Naso gastric feeding
  • Gastrostomy care
  • Ventilator care
  • Seizure management
  • Airway management including tracheostomy care

The service can be delivered once the following has taken place:

  • Carers are familiar with the child and family
  • Carers are competent to deliver all the agreed aspects of the individual child’s care
  • The child’s parents feel happy for their child to be left in their care

All carers are experienced in child care and will always consider every child’s special communication needs and their ability to enjoy pleasurable activities and so in addition to providing clinical care will explore appropriate activities such as sensory and play. In good weather and if feasible children can be taken out for walks.

Referral criteria

We use the definitions for children requiring palliative care as defined by Together For Short Lives (formally ACT). You can read the definitions on the Together For Shorter Lives website.

Definitions

  • Category 1 – Life-threatening conditions for which curative treatment may be feasible but can fail. Access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services. Examples: cancer, irreversible organ failures of heart, liver, kidney.
  • Category 2 – Conditions where premature death is inevitable. There may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities. Examples: cystic fibrosis, Duchenne muscular dystrophy.
  • Category 3 – Progressive conditions without curative treatment options. Treatment is exclusively palliative and may commonly extend over many years. Examples: Batten disease, mucopolysaccharidoses.
  • Category 4 – Irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health complications and likelihood of premature death. Examples: severe cerebral palsy, multiple disabilities such as following brain or spinal cord injury, complex health care needs, high risk of an unpredictable life-threatening event or episode.

Priority will be given to children who have end of life care needs, those whose condition is deteriorating and/or have high dependency complex care needs.

Referral process

We accept referrals from any professionals who know of children who meet the service criteria (PDF, 245KB). Please contact the service prior to referral to discuss. The referral form (PDF, 326KB) must be completed by the professional referring into the service and families must have given consent prior to referrals being sent.

Charitable trust fund

The service welcomes any donations which help to support all the families we work within Lincolnshire. Donations received are used to purchase special items not funded by the NHS in order to provide additional comfort to children who have a life limiting illness or those receiving end of life care at home, such as special pillows, sheepskins, heat pads, finger oxygen level monitors and baby listeners. Charitable donations also help to support the sending of remembrance cards for bereaved parents.

  • £5 will buy each bereaved family an annual remembrance card
  • £20 will buy a fingertip pulse oximeter
  • £90 will buy a baby monitor with camera
  • £216 will provide a bed sized medical sheepskin

Please make cheques payable to United Lincolnshire Charitable Trust Fund, and on the back write – “Children’s Palliative Care Fund GO71”, or ask a member of the service for information.

Contact details

Joanna London, Team Leader
Children’s Specialist Palliative Care Team
Kingfisher Unit
Grantham & District Hospital
Manthorpe Road
Lincolnshire
NG31 8DG

Tel: 01476 464786
Fax: 01476 575967

Together for Short Lives – formally ACT (Association for Children’s Palliative Care)

Together for Short Lives is a is a leading UK charity for children with life-threatening & life-limiting conditions. Their site contains information, resources, research and policies relating to children’s palliative care as well as being the main lobbyist to government.

www.togetherforshortlives.org.uk