Patient advocacy news // 26th February 2019
The Myeloma UK Patient Advocacy team looks at ‘out-of-hospital’ care and its place at the heart of what NHS England's 10 year plan.
Patient advocacy news // 26th February 2019
Our last blog looked at earlier detection, which has the potential to ensure fewer newly-diagnosed myeloma patients need urgent treatment in hospital. Here we focus on the closely related topic of ‘out-of-hospital’ care and its place at the heart of what NHS England is calling “a new service model for the 21st century.”
Unlike many other cancers, myeloma is not linked to lifestyle factors and cannot be prevented by changes such as eating more healthily and taking regular exercise. It also remains incurable, but patients are now living longer with myeloma than ever as the number of treatment options has grown rapidly.
Improved survival is not only cause for celebration, but also means that myeloma is a good example of how the NHS can people to live with long-term conditions. The Long Term Plan aims to move as much care as possible in to the community and use outpatient visits rather than inpatient stays whenever hospital treatment is needed. Achieving these means that the right type of care must be available to allow patients to stay at home.
The first step in the NHS Long Term Plan is for neighbouring GP practices to work together in networks covering 30,000-50,000 people. Care in the community will be provided by wider teams of healthcare staff including GPs, pharmacists, district nurses, community geriatricians, and Allied Health Professionals such as physiotherapists. In time, the networks will also build links with local care homes to ensure that residents can consistently access NHS care without added pressure on emergency departments.
More people living with long-term conditions will be able to join the personalised care programme. This is designed to support people to manage their physical and mental health and wellbeing, and make informed decisions about care when their health changes. Personal Health Budgets will be provided to more patients in an effort to let people choose the type of care they feel is right for them.
The Long Term Plan also commits to more personalised end of life care. Staff will be trained to better identify people who are in their last year of life and provide support based on personal care planning introduced for each patient. Leaders in the NHS believe this will enable people to have more of a say in where and how they are cared for in their final months and weeks. Blood cancer patients are known to have less support and choice at end of life, so it is important that those with myeloma can benefit from any new initiatives.
There is also a welcome commitment in the plan to sharing best practice in identifying and supporting carers. Millions of people in England provide regular care on an unpaid basis, usually for family members. Many carers are themselves older people living with long-term health conditions. Improvements in this part of the system are overdue and we will watch closely for further developments.
At Myeloma UK, we aim to help shape care in a way that meets the specific needs of myeloma patients. No two myeloma patients are the same and it will be important that in practice these planned actions take account of the highly personal nature of living with myeloma.
At the moment the 10 year plan is inevitably at a very high level. We need to understand better what it means for myeloma. Changing the way care is provided can mean more flexibility for patients and a better use of resources. However, we need to ensure that changes still deliver high quality, expert care for patients. We will keep working with Government and the NHS, in partnership with other charities, for more clarity on the proposals and to make sure that the voice of myeloma patients and their families and carers is heard.
It is also important that any new model can provide high quality care and support in the right setting, in all parts of the country. We will watch closely for more detailed developments and work with Government and NHS England, as well as with other charities through the Blood Cancer Alliance (BCA) and Cancer52, to make sure it delivers for myeloma patients.
You can read the BCA response to NHS England’s Call for Evidence on the Long Term Plan here.
We’d like to hear from you on the action on out-of-hospital care in the Long Term Plan. What do you think of the proposals? What do you think might be missing and what more would you like to know? Let us know in the comments below.