I’d not heard of Cancer Care Reviews until very recently - yet all of us with cancer are meant to have them. Hence this blog to find out more about them….this is my first attempt to capture some of the key issues and look at where we are going in Gloucestershire. Research from a while back showed that one in three cancer survivors experience moderate to severe unmet needs at the end of treatment, and for 60% of people, these needs have not improved six months after treatment. It is research like this that led to The National Cancer Survivorship Initiative (NCSI) being set up in 2008 to develop and test a number of key interventions that together are called the Recovery Package.
Evaluations consistently pointed out that implementing elements of the package requires a shift in culture away from dependence on professionals towards empowering patients. It is great that this is recognised but we have a long way to go.
What is a Recovery Package?
These are a series of interventions that are aimed at improving our quality of life during and after treatment for cancer - helping us to self-manage the impact cancer and treatment can have on our lives - see Macmillan's paper on it here: https://www.macmillan.org.uk/documents/aboutus/health_professionals/recoverypackage/recoverypackagesharinggoodpractice.pdf
If you are not offered these types of support but feel any of them would be useful, you could ask your healthcare team if they can arrange them. The recovery package has four parts:
• Holistic Needs Assessment
• treatment summary
• health and wellbeing events
• cancer care review
They may not always have these names - and in my own treatment I have only come across the first of these:
1. Holistic Needs Assessment (HNA); this is an assessment where we answer questions about our needs and what is important to us. The questions will be about all areas of our life. For example the HNA looks at physical, practical, emotional, spiritual and social needs. Then based on our needs and a discussion with us, the team creates a care and support plan. This can include advice and information on lifestyle, self management, local support and a referral to a specialist service.
Apparently you can have the HNA at diagnosis, the end of treatment, or whenever your needs change. You can also ask to have an HNA when you feel you need it. The HNA ensures that your team spots your needs early and find ways of helping you in the best appropriate way.
In terms of the Care Plan I see that Macmillan also recommend people with cancer should have a co-developed personalised prehabilitation care plan (PPCP) as part of an overall care plan (i); “Individualised exercise, nutrition and psychological support, should be integral to the care of all people with a cancer diagnosis”.
Just after diagnosis things are not always easy to absorb, remember or understand. However I don’t remember ever having a conversation with anyone about the HNA except a brief phone call. I do remember the tick box HNA form that I have a copy of plus a very sparse Care Plan that was sent through - but certainly there was no talk of Prehab. Indeed as I’ve noted before when I asked my oncologist about exercise and diet he said I was pretty fit and to just keep doing what I was doing - that was without any conversation about what I was doing!
Self assessment as to whether for example we are doing enough exercise or the right nutrition seems a poor way to do it. We may well know what is needed but for me I hadn't appreciated that in addition to aerobic exercise I needed to doing strength-bearing. This is the time when folks are open to discussions to make changes that support is crucial. If, for example, it is judged that this is not the right time then there should be a way for health professionals to pick up on it at a later date.
I have spoken to a number of folks locally who similarly had one of these HNAs - some remember their conversation but no one I have spoken to was asked about exercise or diet. This seems a hugely wasted opportunity to let people know how they can support themselves and make a real difference to health outcomes.
2. Treatment Summary; this is a written summary of our treatment for us to take away usually after treatment is completed. A copy is also sent to our GP so we both know what has happened and what to expect after treatment. The summary should include details about the cancer treatment we have had, any tests or investigations we might need, side effects or potential signs and symptoms we need to be aware of and contact details for our healthcare team, in case we or our GP need to contact them.
I am told that we may find the treatment summary useful if we want to tell others about our care. For example when applying for travel insurance. I have no memory of this but maybe one of my visits covered this - anyhow I will go and request a copy in my next visit!
3. Health and Wellbeing Events; different health authorities provide varying levels of support. Gloucestershire have a small number of talks like on Prehab or specifically on treatments like radiation. These events usually take place in a hospital and last a few hours. Macmillan list a range of talks that some health authorities give;
• claiming benefits and other financial support
• getting back to work or education
• eating well and leading a healthy lifestyle
• the possible long-term consequences of treatment
• the emotional effects that cancer and its treatment may have, and where to seek help if you need it
• being aware of signs and symptoms that may mean the cancer has come back, and who to contact
• local services and opportunities – for example, support groups or local physical activity groups.
This looks more comprehensive than Gloucestershire’s offer - Macmillan do have lots of info on these topics so do call them free on 0808 808 00 00.
4. Cancer Care Reviews; a discussion with your GP or practice nurse. The Quality Outcomes Framework requires all GPs to carry out a Cancer Care Review within six months of receiving a confirmation of a patient receiving a cancer diagnosis.
The aims of the discussion are to check whether you have any concerns or need any information or support. They are also used to tell you what to look out for, what to do and when you might need to contact your healthcare team for advice. Macmillan have a useful page about these Reviews for professionals: https://www.macmillan.org.uk/healthcare-professionals/cancer-pathways/prevention-and-diagnosis/cancer-care-review
Again I have no memory of any meeting called this but my GP was very supportive throughout my treatment and I guess we covered some of these issues. Indeed unlike many GPs that I hear about from others with cancer, my GP was prepared to raise and discuss issues like the impact of treatment on sex life.
After treatment
There is lots I could write about what happens when treatment is complete - and for many that time can be one of the hardest times as it can feel like support ends and others think you are back to 'normal' - but more of that in another blog. In brief there are various options that continue to involve your healthcare teams input. Some folks might continue to see their oncologist or other member of the team, while some may be discharged and only come back if their situation changes. In my case I am now being monitored every six months with a PSA test and a call from an oncology nurse.
Cancer Pathways
The above gives a flavour of what we can request. This ‘support’ is part of a Cancer Pathway that aims to give us access to high-quality diagnosis, treatment and care. These pathways are developed to support healthcare professionals at the front line of cancer diagnosis and care. They often include easy to follow flowcharts to guide healthcare professionals deliver best practice diagnosis, treatment and support.
Prostate Cancer UK have an excellent few pages on their website that looks at diagnostic, treatment and support pathways (ii). They aim for example to achieve an early diagnosis in men at higher than average risk of the disease. Their Prostate cancer pathway is in the process of being updated.
These pathways are one of the areas that I think can make a difference to care. At the moment in Gloucestershire - and across the country - we do not have clear pathways that are followed by all our health teams. Indeed this is one of the reasons I joined the Gloucestershire Cancer Patient Reference group a couple of years ago. We need significant improvements. A blog on that Reference Group is for another time - the group has just merged and we are developing new terms of reference but if you live in Glos and are interested in joining the group do get in touch. I have hopes that it will now be a vehicle where more real co-production is possible and we can see some further improvements.
As a representative of the Patient Reference Group I have recently joined (as a volunteer) the staff group looking at Prehab in Glos for a series of meetings. It is a privilege to be part of their plans and passion to build improved services. Some key areas are improving but resources are still not being prioritised and we are a long way off from a quality service….the Prostate Pathway for example is just starting to be looked at and much work will be needed to get health teams on board.
I have spoken to a number of folks locally who similarly had one of these HNAs - some remember their conversation but no one I have spoken to was asked about exercise or diet. This seems a hugely wasted opportunity to let people know how they can support themselves and make a real difference to health outcomes.
2. Treatment Summary; this is a written summary of our treatment for us to take away usually after treatment is completed. A copy is also sent to our GP so we both know what has happened and what to expect after treatment. The summary should include details about the cancer treatment we have had, any tests or investigations we might need, side effects or potential signs and symptoms we need to be aware of and contact details for our healthcare team, in case we or our GP need to contact them.
I am told that we may find the treatment summary useful if we want to tell others about our care. For example when applying for travel insurance. I have no memory of this but maybe one of my visits covered this - anyhow I will go and request a copy in my next visit!
3. Health and Wellbeing Events; different health authorities provide varying levels of support. Gloucestershire have a small number of talks like on Prehab or specifically on treatments like radiation. These events usually take place in a hospital and last a few hours. Macmillan list a range of talks that some health authorities give;
• claiming benefits and other financial support
• getting back to work or education
• eating well and leading a healthy lifestyle
• the possible long-term consequences of treatment
• the emotional effects that cancer and its treatment may have, and where to seek help if you need it
• being aware of signs and symptoms that may mean the cancer has come back, and who to contact
• local services and opportunities – for example, support groups or local physical activity groups.
This looks more comprehensive than Gloucestershire’s offer - Macmillan do have lots of info on these topics so do call them free on 0808 808 00 00.
 |
Example of Cancer Care Review |
4. Cancer Care Reviews; a discussion with your GP or practice nurse. The Quality Outcomes Framework requires all GPs to carry out a Cancer Care Review within six months of receiving a confirmation of a patient receiving a cancer diagnosis.
The aims of the discussion are to check whether you have any concerns or need any information or support. They are also used to tell you what to look out for, what to do and when you might need to contact your healthcare team for advice. Macmillan have a useful page about these Reviews for professionals: https://www.macmillan.org.uk/healthcare-professionals/cancer-pathways/prevention-and-diagnosis/cancer-care-review
Again I have no memory of any meeting called this but my GP was very supportive throughout my treatment and I guess we covered some of these issues. Indeed unlike many GPs that I hear about from others with cancer, my GP was prepared to raise and discuss issues like the impact of treatment on sex life.
After treatment
There is lots I could write about what happens when treatment is complete - and for many that time can be one of the hardest times as it can feel like support ends and others think you are back to 'normal' - but more of that in another blog. In brief there are various options that continue to involve your healthcare teams input. Some folks might continue to see their oncologist or other member of the team, while some may be discharged and only come back if their situation changes. In my case I am now being monitored every six months with a PSA test and a call from an oncology nurse.
Cancer Pathways
The above gives a flavour of what we can request. This ‘support’ is part of a Cancer Pathway that aims to give us access to high-quality diagnosis, treatment and care. These pathways are developed to support healthcare professionals at the front line of cancer diagnosis and care. They often include easy to follow flowcharts to guide healthcare professionals deliver best practice diagnosis, treatment and support.
Prostate Cancer UK have an excellent few pages on their website that looks at diagnostic, treatment and support pathways (ii). They aim for example to achieve an early diagnosis in men at higher than average risk of the disease. Their Prostate cancer pathway is in the process of being updated.
These pathways are one of the areas that I think can make a difference to care. At the moment in Gloucestershire - and across the country - we do not have clear pathways that are followed by all our health teams. Indeed this is one of the reasons I joined the Gloucestershire Cancer Patient Reference group a couple of years ago. We need significant improvements. A blog on that Reference Group is for another time - the group has just merged and we are developing new terms of reference but if you live in Glos and are interested in joining the group do get in touch. I have hopes that it will now be a vehicle where more real co-production is possible and we can see some further improvements.
As a representative of the Patient Reference Group I have recently joined (as a volunteer) the staff group looking at Prehab in Glos for a series of meetings. It is a privilege to be part of their plans and passion to build improved services. Some key areas are improving but resources are still not being prioritised and we are a long way off from a quality service….the Prostate Pathway for example is just starting to be looked at and much work will be needed to get health teams on board.
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| Very old leaflet! |
However here in 2023 more patients should at least be hearing about the Prehab offer from the NHS - that includes the offer of support re exercise, nutrition and in some cases mental health support.
Notes
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