Pepper Children's Nurses

The Pepper Children’s Nurses are able to address the emotional needs – not only of the child but that of the whole family, each trying in their own way to cope with their predicament.

For parents living with the fact that their child’s condition may be steadily worsening, is devastating and on a practical level, physical disability can mean that without the nurses, they are virtual prisoners in their own home.

This situation can put enormous strain on even the strongest of relationships. The nurses are able to give parents some respite and enable families to have some space for normal family life and activities which often give them the strength to be able to carry on and cope with their situation.

Brothers and sisters in the family, who are healthy, often have their childhoods disrupted and through no fault of the parent, siblings can find themselves sidelined and ignored, quietly coping with their own feelings of anguish. The Pepper Children’s Nurses recognise and concentrate on the emotional needs of siblings who need their share of love and support and to live as normal and happy as possible.

Please click here to contact the Pepper Children's Nursing Service

Family Support Services Manager

The Pepper Family Support Services Manager organises and provides bereavement counselling and the co-ordination of services to families, before, during and after bereavement.

Pepper Children's Support Facilities

The Pepper Children’s Support Facilitator works alongside the nurses providing structured, stimulating play experiences according to each child’s individual needs and capabilities. This role also has a focus on supporting children with pre and post bereavement support who may be affected by the death of a sibling or an adult in their family.

The Pepper Children’s Nurses work in partnership with the General Practitioner and District Nurse and other palliative care providers in the area to achieve a seamless service, but anyone can contact the service directly.

On referral, one of our team members will visit the patient at home to assess his or her needs, following which, a plan of care is developed jointly with the nursing team, the patient and their family. There is no charge to the patient or their family for the nursing care we provide.

Pepper Nursing Team update

Since my last report we have continued to keep busy with the many families in our care. We currently have 32 children (having had as many as 36) on the caseload, who continue to need varying amounts of support from the team. Whilst we continue to offer short breaks to families as often as we can, even for the children who are very well there are times when some families have to be a priority because of assessed need. Since December we have been directly involved in the care of 5 children who have sadly died. One of the children, with whom we had been involved for several years died very suddenly in hospital. The other 4 children were at home with their families, where they all wanted to be and our input varied from four days to several months.

All of the nurses would prefer to have the opportunity to get to know the child and family for a period of time, if possible, as it is beneficial to everyone if there is a chance to build a trusting relationship. However, we do take ‘emergency referrals’ where the child may only have a very short time left and we will try and make what can be a very difficult situation, as calm and as peaceful as possible. Even in these situations each child and family will cope differently and we are often guided by them as to what their needs are and what level of input they require from us and other services involved. It remains a privilege to be able to care for the children and families in their own homes.

The Children’s Support Facilitator (CSF), Karen is getting busier all the time and she too is able to respond to the referrals we receive where end of life care is imminent, offering support and guidance to other children in the family and their parents. All of the families are offered bereavement support, regardless of the length of time we have been involved and that usually comes from the nursing team and/or the CSF. We recognise that we are not always the right people to do it and with the guidance of the Family Support Team are able to review this and where appropriate refer individuals on to other services and networks that are available to them. It is also very important to ensure that the team of professionals involved in these situations receive the right support to ensure that they are able to continue to cope with the physical and emotional side of this work and this is provided on a regular basis.

In the next few months we will be having a new member of staff joining the nursing team. We have been fortunate enough to obtain pump-prime funding for this post for the first two years from The Roald Dahl Foundation. After this time the funding for the post will be carried on by The Pepper Foundation/Iain Rennie Hospice at Home. The arrival of a new nurse will be very welcome, in part because we have been getting steadily busier over the last year or so and we are conscious of the reduced availability we have for all of the families, who still need some support when possible.

Sonya O’Leary
Pepper Children’s Team Leader