Legal right to choose where to have treatment

Hi Hornseagal,

I'm sorry to hear about your diagnosis, and for the delay you've experienced in receiving news about treatment options.

This is just a short message to let you know that I have moved your question over to our Ask a Nurse forum so our qualified Cancer Information Nurse Specialists can advise you further.

If you need any help or support in the meantime, please don't hesitate to give our Macmillan Support Line a call. The Support Line teams can be reached on freephone 0808 808 00 00, and they're open from 8am to 8pm, 7 days a week.

Hi Hornseagal,

Thanks for getting in touch and welcome to the online community. My name is Fiona and I’m one of the Macmillan cancer information nurses.

I’m sorry to read about your diagnosis of lung cancer and the delays you have faced.

The NHS in all four nations is committed to making sure that people with cancer or suspected cancer are seen as quickly as possible.

The time you can expect to wait varies depending on where you live.

Wherever you live in the UK, if you are referred to a specialist, you should not have to wait longer than 62 days from the referral before starting treatment. This time starts on the date that the hospital has received an urgent referral for suspected cancer.

Waiting times can vary depending on the type of cancer and the type of treatment you are going to have.

You may want to contact the hospital’s PALS team. They are there to offer confidential advice, support and information. They can listen and help resolve concerns or problems that you have.

My Planned Care gives information about waiting times at hospitals in England.

You may find our information on understanding your cancer care rights helpful. Our raising your voice toolkit may also useful for you.

I hope this information helps. Please feel free to get back in touch if you want more information or support.

Best wishes,

Fiona P,

Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref: FP/LM

You advise that "you should not have to wait longer than 62 days".(i.e. approx 9 weeks) However, "My planned care"  indicates  a waiting period of 14 weeks. Therefore, I need to know , as I have a legal right to choose where I have my NHS treatment, where I can get earlier treatment  and how to initiate the enquiry.

Hi Hornseagal

My name is Penelope and I am one of the other Cancer Information Nurse Specialists on the Macmillan Support Line.

Thank you for getting back in touch. Unless specifically stated the My Planned Care website does not relate directly to cancer waiting times. On the page for each hospital speciality there should be a sentence that says ‘Waiting time information is not applicable for patients on a cancer pathway’. The My Planned Care website can give an indication of different hospital waiting times for comparison but does not show cancer waiting times. We are sorry if this information was not clear or has caused you any distress.

You may like to give us a call on the Macmillan Support Line so that we can talk things through with you further. The phone number is 0808 808 00 00 or you can chat online. Please choose the option to speak to a nurse. We are available 8am to 8pm every day.

If you decide that being referred to a different NHS Trust could speed things up, then your GP may be able to do a referral to a different area. This may not apply to an urgent cancer referral so do speak to your GP for advice. A new referral may also delay things as your referral would go back to the beginning of the pathway.

You do not mention if you have had any recent contact with the cancer or respiratory team since your diagnosis. Finding out how much longer it may be for an appointment or treatment may be the first step. If you have the contact details of a specialist nurse or consultant’s secretary, then do ask them for more information. If you do not have these details, you could try to make contact via the hospital switchboard.

As my colleague Fiona mentioned there is also the Patient Advice and Liaison Team (PALS) (or equivalent depending on where you are in the UK), who deal with complaints and concerns.

Unfortunately, we know that the 62-day pathway is a target that is not always met. You do not mention if you have been kept up to date as to where you are in the pathway and what might happen next. Please do speak to us directly on the support line so we can fully understand the situation and give information that is most relevant to you. Alternatively, The Patient’s Association may be able to help with your question about your legal right to choose where to have treatment.

Waiting for cancer treatment can be a difficult and distressing time. If further support would be helpful then please look at all the ways we can help or wellbeing support from Penny Brohn UK.

Best wishes,

Penelope, Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref/SH

Hi Penelope,

Many thanks for your considered reply and for pointing out that the My Planned Care website does not relate directly to cancer waiting times, which I had not noticed, but assumed that it did so, having been referred there by your colleague, Fiona P. Why would Fiona P, another Macmillan Cancer information nurse provide a link to information which is not cancer related and therefore not relevant, misleading and unnecessary and who also apparently had not noticed my opening statement that “I have recently been diagnosed with lung cancer”. It also raises the question as to where – if not in the My Planned Care website – current waiting times for cancer treatment may be found.

I am also pleased to note that :

“Wherever you live in the UK, if you are referred to a specialist, you should not have to wait longer than 62 days from the referral before starting treatment” (but see below).

In addition Cancer Research UK say:

“The aim for all healthcare systems within the UK is to make sure that you have a diagnosis and start treatment as soon as possible.”

However, this does not appear compatible with your advice that :

“A new referral may also delay things as your referral would go back to the beginning of the pathway.”

Not only is this not therefore “as soon as possible”, but is also apparently shocking information, as (1) it completely undermines the spirit of a legal right to choose where to have treatment because of the delays to treatment it would cause and (2) when, in the case of cancer treatment, it is known that the cancer can be growing and spreading all the time that this duplication of tests is being carried out and, is hence in itself is a deterrent to changing treatment source. It is quite perverse, absurd and frankly, very wrong that the findings from earlier tests carried out by another qualified authority would not be accepted.

62 days is 62 days, regardless of who carries out tests and treatment. We should all be on the same side, marching to the sound of the same drum - i.e. that of the patient.

The 62 day target period, within which treatment is regarded as being most effective, ends, in my case on 19 June – just a week from now at the time of writing – without any mention yet of treatment and, after which, any treatment will be less effective.

Last Friday I had a biopsy and am now awaiting notification of considered treatment, as a result of which I will consider talking to my GP regarding the possibility of treatment elsewhere,

Hi Hornseagal,

Thanks for getting back in touch. My name is Audrey and I am one of the Macmillan Senior Cancer Information Nurse Specialists.

Thank you also for providing some feedback, further information on where you are within the waiting time frame, and also about the recent biopsy that has been taken. I am sorry to hear that you have received little information or updates about when treatment may start. This must be causing you great concern and understandably so.

Unfortunately, we are not directly part of the NHS so have no access to patient records or NHS waiting lists. Therefore, we are not best placed to directly advise about specifics of your care such as treatment decisions and why there has been a delay in your treatment plan.

Waiting lists can vary from trust to trust and also around an individual's diagnosis pathway. Your Specialist Team are best placed to discuss this with you, and it may be helpful to contact them to try arranging a time to discuss this. If you fall out with the timeframe of the National guidelines, you have the right to question why this is happening and to be given expectations about what may happen next. Writing down questions and concerns you are having may also be helpful.

You mentioned that you are planning to speak with your GP, which can be helpful as they can contact the specialist team on your behalf to try to expedite any plans for treatment and treatment starting soon.

Another option is to send your questions and concerns in an email to the Specialist team. This can ensure you have a documented timeline of your concerns being logged. The consultant's secretary can give you the email address to allow you to forward your concerns. You can make the request that you also have a reply in writing.

As part of the 62-day target period it can take several tests and investigations to assist the Specialist Team in deciding on treatment and understanding an individual lung cancer. This is required to ensure that the specialist team get the best and most effective treatment for you. No two people with a new diagnosis of lung cancer will necessarily be treated the same. Everyone’s cancer and treatment are individual to them. There are times when diagnosing a cancer can be challenging and can take longer than the national timelines/guidelines.

When deciding on the best treatment for your cancer the specialist team looks at many factors to help guide their treatment decisions. Factors such as:

• The type of cancer a patient may have
• The stage and grade of the cancer
• A patients age, overall health, and any personal needs of the patient

This is often referred to the staging and grading process of diagnosis. This allows the Specialist team to make the right and most effective treatment plan for you and your cancer.

Your results will also be discussed by a team called a Multi-Disciplinary Team (MDT) to help make a treatment decision. I wondered if this may be the next step with your specialist team (after your recent biopsy) to help decide on the most suitable treatment for you.

Biopsy results normally take between 7-14 days to be reported back to your consultant. Although this can vary from hospital to trust. It is difficult to predict, because at times further tests may be needed after the first examination of the sample. It can also sometimes be necessary to send the microscope slides away to for additional testing to assist with any treatment decisions. Biopsies may also be assessed for genetic testing to assist with treatment decisions, as certain types of lung cancers may respond differently to treatments based on genetic mutations found in the body’s cells. This helps to ensure that the specialist team understand as much as they can about cancer to ensure you can get the best and most appropriate treatment.

They are also guided by current guidelines that are based on the most recent evidence and research of the most effective treatments available currently for patients, and will assist the team in making any treatment decisions.

The NHS states you have the legal right to ask for your appointment to be moved to a different provider if you're likely to wait longer than the maximum waiting time specified for your treatment. This link can offer you further information about this.

If you remain unhappy or feel you cannot approach the Specialist team, there are ways in which you can raise any concerns or complaints within the NHS about your care. If you have not already, the first point of contact would be with the local PALS service, as my colleagues have previously discussed.

If this has been done and you remain unhappy you can also seek legal advice or contact the health and parliamentary ombudsman to raise a complaint or clinical commissioning group (CCG). It may be helpful to write a diary of events, your concerns and any questions you may have.

Citizens advice and AVMA have some information about seeking legal advice around any NHS care.

Age UK and  GOV.UK have further guidance and advice that may be helpful.

The Roy Castle Lung Cancer Foundation also offer further information avenues of support that you may find useful.

If you feel your care is not falling within these guidelines Hornseagal, you must contact your specialist team to have them explain why there has been a delay and to help confirm when treatment will be expected to start. Your specialist team can also answer your concerns about any risk this delay may have to your cancer. As they know your results and history well, they are best placed to advise.

Please also consider reaching out to us by calling one of our nurses to chat things over in more detail.  I hope that a treatment plan update will be soon shared with you. I appreciate that waiting for the unknown and managing the uncertainty of what is next can be extremely difficult.

Best wishes

Audrey

Senior Cancer Information Nurse Specialist