NHS England’s 10 year plan: new ways to provide care ‘out-of-hospital’

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.

Share your thoughts

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.

Leave a comment on this story:

    Avatar Alison says:

    This is very welcome, my twice weekly trip to hospital takes the whole day and I’d welcome treatment nearer home, carers too get worn out from travelling and heaven help anyone who doesn’t have a cater. I welcome the choice over end of life care and that it extends to 12 months too

    Avatar JOAN MORGAN says:

    This Care in the Community has been talked about for a long time now and really means transferring the care in the Hospital to the Community. I am wondering whether a Nurse will be able to give an injection for cancer care to the patient in their own house as it is now given in Hospital.. It would certainly “free up” a chair on a Cancer Day Care Ward. At the moment Velcade is given this way and various other treatments for Myeloma. It has been talked about but that is all at the moment. My husband is being treated at Russells Hall Hospital in Dudley, West Midlands.


    Avatar Martin J Bristow says:

    I think this sounds promising, I particularly endorse the idea of personal health budgets. The sense of personal control is a powerful motivator improving the state of mind and encouraging as much self-reliance as is possible.

    I am a touch sceptical about the idea that we could see a move to localised treatment. Many drugs used in the treatment of My Myeloma are not the sort of substances it is wise to risk then getting into public circulation. Hospital sites are more secure. It is also difficult to see how the drugs would be made up a task currently done in Hospital pharmacy would either remain there requiring a logistics network to deliver, or move to local centres. How feasible is that, I don’t know.

    Avatar Vicki Heselton says:

    Dear Myeloma UK, I feel that I would most definitely be able to assist and describe end of life care requirements as I nursed my husband at home in his final weeks. I have the ability to describe in detail what caring for someone at home entailed and how in my opinion the NHS is significantly still ill prepared for meeting the needs of the family and the patients in those very important last few weeks- in addition to the stresses that go alongside it for the patients loved ones who are watching this unfold. I am happy to go into detail to describe this and what I did after my husband passed away – and what responses I received from the NHS trust,

    Avatar Editor says:

    Many thanks for your comments. We really appreciate you taking the time to share your experience and insight. The burden of regular hospital visits is one that we hear about from patients and carers in a number of ways. Through the Infoline and at Infodays and also through the work of our Clinical Services Excellence Programme (CSEP) which accredits hospitals against best practice standards that we developed in partnership with patients, family members and clinicians. As survival in myeloma improves and, for some patients, is treated more like a chronic condition it is understandable that patients would like their out-patient care to be delivered differently, in a way which impacts as little as possible on their daily lives. We are supportive of NHS efforts to introduce more flexibility into the way these services are delivered. However, we also know that some patients do value being treated in a clinic setting and, for some treatments, at the moment this is the safest and best way for them to be administered. It is important that NHS plans take account of how individual myeloma is to each patient and also that it ensures that highly specialist skills are properly targeted.

    End of life care is a hugely important issue and one where more work is needed to ensure that patients and families get the choices and support they need at such a difficult time. There is a lot more work to be done in deciding what the plan will mean in practice for myeloma. We are continuing to meet with NHS England and other charities to flesh out the proposals and make the case for myeloma. We look forward to keeping in touch with you on our progress. If you have comments you would like to share but would rather do so privately or if you would like to find out more about our patient advocacy work please contact – Shelagh Head of Patient Advocacy

    Avatar Gareth James says:

    I am now three weeks into my Healthcare at Home Chemotherapy, which is an outsource service provided by a company. It avoids a weekly 3 hour return travel for me, waiting time at the hospital, plus treatment time (which is only 15 minutes!), etc.. So for me it works in part, time released is good, however the service isn’t very personal and for someone who uses the time saved to do work then appointment times being only an approximation is frustrating and somewhat time wasted. The nurses are brilliant, however the back office support is less thorough the call centre seems more interested in ending the call than sorting things out, I am still waiting for my welcome pack for example. I have very good contact with my team at the hospital, and my GP is fully on board and supportive which is a great help also. On balance I’m glad to be taking part in this early scheme and I hope the predictability of timing improves with experience.

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