Care at Home

For most of us, most of the time, the home environment is the preferred location for the administration of care, support and health nourishment. Provision of home based healthcare services is especially beneficial to families who support children with complex and palliative care needs. Staying at home enables those children to remain in familiar surroundings and with the people who love them most.

However, the specialist knowledge and skilled care needed - to maintain these children at home - comes at a great premium. The complexity of organising a dynamic and responsive care package that provides ‘around the clock’ needs led service – when and if required- is often very challenging to both service users and providers.

Breakdown in communications and lack of out of hours support are often sited as leading reasons for parental stress and anxiety. In a number of studies from across the globe parents have reported feelings of isolation and despair when their child is very unwell. Poor symptoms control and a resulting significant decrease in quality of life are also noted as reasons for failure in maintaining and sustaining care of children with complex and palliative care at home.

Telemedicine, which is the delivery of healthcare and the exchange of health information across distances, offers a potential bridge to overcome some of the noted challenges. The pilot that we are hoping to run will affirm or refute this assumption.

With the help of the Scottish Spina Bifida Association we will engage parents who care for newborn shortly after they are discharge from hospitals. NHS Lothian are helping us to link carers of children with complex needs to specialists community paediatricians. It is hoped that lead clinicians from NHS Greater Glasgow will lead and support the evaluation of Telemedicine in the homes of children with palliative care needs.

The installation of video conferencing systems into patient’s homes will shortly commence.  Using a laptop system with a high quality video camera it will be possible to video link directly to the clinician for help and advice.

Evaluation of the pilot should demonstrate impact on both patients and community based practitioners from using Telemedicine on a mobile PC platform.  Enabling access to designated knowledge depositories, to support information needs of patients, carers and professionals, whilst offering an enhanced communications channel may impact on the way future of home based care is offered for the designated client group.