Local nursing support
Many people live a long way from their local hospital so it’s important to be aware of local services that can support you and your family. This section explains the services that are mainly based locally in the community rather than in hospital, and the range of practical support available.
Community health services
Most community services support people at home. For example you might need help from a community nurse at home. They also frequently offer access to practical support, such as equipment.
It can sometimes take a while to get services organised, so try to find out what’s available in your area before you need it. If you’re not sure where to start, speak to the GP.
What happens when someone leaves hospital?
Before someone with pancreatic cancer leaves hospital, they should be given advice and information about any care they might be offered at home, which may be called a care package. The support offered will depend on things like the person’s age, how unwell they are, and support from the family, as well as the stage of their cancer.
It’s a good idea to ask about this well before you are discharged, if it hasn’t already been discussed. The nurse in charge of the ward may be able to arrange it. The first stage is usually an assessment by the community nursing service (see below) or the occupational therapy team in the hospital. The GP should also be aware of the care package.
Community nursing service
If you need nursing support at home, this is most likely to come from the community nursing service. Community nurses provide nursing care such as giving medicines, carrying out examinations, dressing wounds, and providing emotional support. They work closely with GPs, social services, and other services to coordinate care.
Depending on how services are organised where you live, nursing support may be given by district nurses, community matrons and/or palliative care or Macmillan nurses.
You may hear the term palliative care. Palliative care aims to relieve pain and other symptoms. It also provides people with emotional, physical, practical and spiritual support to help them deal with pancreatic cancer that can’t be cured. And it supports family members. Palliative care isn’t just for people in the final stages of life.
Nurses will usually visit during the day, but there will be a team on duty in the evenings and at night, so it should be a 24-hour service. Make sure you know the number to contact the team out of normal hours.
If you are at home and need nursing support, ask the GP to organise an assessment by the community nursing team, or to give you the phone number so you can contact them.
“Once the district nurses were assigned they were really good at coming and checking dad.”
“Don’t be afraid to ask the community nurses what equipment is available and how to get it. Be persistent if you need to. Get equipment as soon as it’s needed to make life more comfortable. Having the equipment at home definitely helped us care for Nicola in the environment she wanted to be in.”
Specialist nursing support
Ideally, everyone with cancer should have access to a specialist nurse once they are discharged from hospital. These nurses help people with cancer and their families with all aspects of living with cancer, from providing pain and symptom relief and discussing problems and feelings, to coordinating with other members of the care team. Depending on where you live, these nurses may be palliative care nurses, hospice nurses or Macmillan nurses – whatever their title, they all work in a similar way.
These nurses are different to the clinical nurse specialist who you will have seen at the hospital. But you will still be able to contact the clinical nurse specialist – for example, with questions about treatment or side effects.
It’s a good idea to ask to be put in touch with a nurse in your area early on, as they can be a great help. The GP or keyworker should be able to refer you. The nurse will usually do an initial assessment, then further visits depending on the individual situation.
Marie Curie nurses have a different role. They provide nursing care at home for people with cancer who are nearing the end of their lives. For example, they may come in overnight so that a carer can get some sleep. Contact the GP or district or community nurse to be put in touch with a Marie Curie nurse.
Hospices aim to improve the lives of people with an illness that can’t be cured (a terminal or life-limiting illness). They provide support for their physical needs, such as dealing with pain or symptoms. They also provide emotional, social and spiritual support. Hospices also support carers and families. A hospice care team may include nurses, doctors, social workers, counsellors, complementary therapists and more.
Hospice care isn’t just for someone at the end of their life. Services are free and will vary depending on the hospice, but they may include:
- pain and symptom control
- emotional and social support
- complementary therapies, such as massage and aromatherapy, to help deal with symptoms
- day care – spending time in the hospice without being admitted
- respite care – staying at the hospice for a few days to give family and carers a break.
Hospice care is provided in different places.
- In hospices – which can offer services such as day care, respite care, a massage or just a cup of tea and a chat. People may also stay at the hospice for a short time, for example to get symptoms such as pain under control.
- In people’s homes – by ‘Hospice at Home’ services, Marie Curie or hospice nurses, and community palliative care teams.
- In hospitals – by hospital-based palliative care teams.
Most people are referred for hospice care by their GP, district nurse or Macmillan or palliative care nurse. Ask them what hospice services are available locally. Hospice UK has details of local hospice services.
“I was told about the local hospice straight away. I saw them in the early days about supporting our children, to find out what they could offer. I was offered support, groups and complementary therapy – I declined, but knew it was there if needed.”
“We received great support from the local hospice. If we had any concerns we only had to phone Nicola’s community hospice nurse and she visited. This prevented us having any more stress and concern than necessary.”
Published June 2017
To be reviewed June 2019