Our 6 tips to manage the NHS if you're struggling - help from Macmillan and the Online Community

Lots of people are worried about pressures on cancer care within the NHS. We know that waiting for results and worries about delayed cancer treatment might affect your general health and wellbeing.

Ellen Lang, Clinical Information Manager on the Macmillan Support Line, said:

“Every day we’re receiving heart-breaking calls from people with cancer who don’t know where else to turn. They’re frightened about their health, distressed about the rising cost of living and, despite the very best efforts of NHS staff, they're really struggling to access the care and treatment they need.

We’ll always be at the end of the phone for people living with cancer, for whatever they need to ask; our helpline is open 8am-8pm 365 days a year for anyone who needs practical, emotional or financial cancer support.

We’re still advising anybody who needs urgent care to seek help via A&E or by calling 111. Doctors and nurses will always do the best they can to make sure patients get the care they need, as quickly as possible.”

With information and support from Macmillan and the Online Community, we hope you will feel better supported through diagnosis, treatment and beyond.

Tips from Macmillan Cancer Support

As the NHS continues to face record pressures, Macmillan has compiled a set of tips with input from clinical and cancer support experts across the organisation to help people affected by cancer to feel as prepared as possible when seeking care or treatment.  

Remember your needs are important  

• It is easy to feel discouraged if your call or visit to an NHS service doesn’t result in the care you need, particularly if you’re already unwell, but it’s important to remember that your needs matter. 
• Continue to contact the services you require and be as open as possible over the phone about any symptoms you are experiencing, as this should help to speed up the process and ensure your needs are met.

In an emergency 

• Call 999 if you’re in an emergency. The call centre will assess and triage your situation and advise on best next steps, whether this be waiting for an ambulance, travelling directly to A&E or an alternative option.
• If your situation feels urgent, but not an emergency, contact your cancer unit or treatment centre for advice. Most cancer units and oncology treatment centres will have an out of hours contact number to call if you need guidance outside of normal daytime hours.

Focus on new symptoms  

• Prepare yourself before contacting an NHS service by writing down any key symptoms you are experiencing. Focus on any new, changing, or uncontrolled symptoms as they may require the most urgent attention. 
• Try to make the most of the time you have with a medical professional by keeping your description brief and don’t be afraid to state precisely what you’re concerned about.

Explore other routes to help  

• If you’re suffering from a minor illness, consider other healthcare professionals aside from your GP, clinical teams or 111 that might be able to help. Pharmacists can offer clinical advice and over-the-counter medicines for a range of common illnesses and many pharmacies are open until late and at weekends.
• Look into other services available through your GP surgery. For example, many primary care teams now include other professionals such as physiotherapists, pharmacists, physician associates, social prescribers, dieticians and mental health professionals which may be best suited to your needs. 
• Through Macmillan’s partnership with Boots, there’s over 4,200 Boots Macmillan Information Pharmacists available in Boots stores around the UK. They have been trained to understand more about the impact of a cancer diagnosis, treatments and how to support people living with, and affected by, cancer.

Finding support with NHS cancer care from the Online Community

In addition to the Macmillan Support Line, the Online Community is here to support each other through cancer.  It can be really difficult when you’re not sure what to expect and we see lots of conversations about waiting for results or appointments. You can connect with people who’ve been through diagnosis and treatment and find out more through their shared experience.

In the anal cancer forum, members were able to support and reassure a new member awaiting treatment. Feeling anxious and not knowing what to expect, they posed a question to the Community.

“Can anyone advise how long it normally takes before treatment starts for radiotherapy/chemo after diagnosis or what needs to happen before that?…I'm still waiting to hear and wondering about the whole process. I am getting anxious and am pretty frightened of the whole thing - especially after reading about side effects etc.” Community member, anal cancer forum

 Members were able to use their own experience of going through NHS treatment to offer advice.

“You should be on the fast referral cancer pathway so I would ring wherever you were treated first and find out if the referral has been made.  Make sure that everyone has your mobile number and email address so that you are contactable at all times.” Community member, anal cancer forum

With the support and information offered from the Community, this member felt able to chase up their referral and find some of the information they needed.

"Hi all and thank you so much for replies!  I phoned the the referral hospital this morning and asked and she rang me back later ..  I'm just relieved to have heard something.  Yes I was worried as the symptoms are gradually increasing since I first went to Dr in November .... Am so impressed with all your bravery at facing all this and for coming thru it! Thank you for the support! X” Community member, anal cancer forum

You can read the whole discussion in the ‘Awaiting start’ thread here in the anal cancer forum or by clicking on the link at the end of each quote.

Other members have been talking on the Community about their worries about accessing the right care from the NHS. 

"Guys are any of your hospitals on the list to strike, what will happen to our treatment, I don’t really wanna read anything about it as it freaks me out, will they just delay everything… is anyone else thinking about what’s gonna happen" - Community member, chemotherapy forum

“I understand there may be a level of triaging and backlog to deal with, but I'm anxious to hear more about what will happen to me… I was told I would be referred to the oncology team near me asap and to hear from them in a few weeks, as there would be a window between having the surgery and receiving immunotherapy or whatever treatment they want to give me.I still haven't heard from them. It's all quite stressful I just would really like to have more information about what all these next steps will look like. Probably a useless question, but does anyone else have experience with how long this referral process took for them?” Community member, melanoma forum

 Members are also seeking answers for their loved ones, when they are doing their best to support them through cancer.

“My mum was admitted to hospital just over 3 weeks ago…We are all extremely concerned as the lady who has come home from hospital is not the lady who went in. She will have sodium levels checked Monday, she'll see her consultant in clinic in 2 weeks but other than that we have been given nothing, she has no one to speak to or contact and neither do we as her carers. My SIL is a nurse and has said that she should have lung nurses to speak to at least. I suppose my question is how can I help her sleep? And who do we turn to? I'm.so worried things might get worse before we see her consultant again and we have no one to ask.” Community member, lung cancer forum

“I previously posted as my husband was put on an urgent 2 week referral NHS due to PSA30.49, enlarged prostate and have now seen the referral that says suspicious area left side of prostate possible lump. Dr never mentioned this to us. He also has slow flowing and difficulty passing urine. Has for a good while now so very anxious. I phoned to chase up referral to be told looking at at least a month before referral going to be looked at as they are still going through December referrals." Community member, prostate cancer forum

In response, members shared their own experience of navigating the healthcare system.

“The 62 day RTT ( referral to treatment) target means that any patient should start their first treatment within 62 days of their GP referral. We all know that the NHS is under pressure and targets are not being met. However, when we got stalled along the diagnostic pathway, citing the 62 day RTT target to help to keep things moving. Also, we inquired about having the biopsy done privately to speed things up. We also told the hospital we were happy to take a short notice cancellation appointment. Result ? Two days wait for NHS biopsy, 2 week wait for a consultation with a private consultant prior to a biopsy. The NHS were quicker.  "The point I’m trying to make is that if you are politely assertive and proactively chase appointments   things can get done quickly on the NHS. If you patiently accept NHS delays you potentially have to wait longer!” Community member, prostate cancer forum

"This is just to say, please do pressure your GP and Consultants.  The person you see has various metrics to contend with.  They have to tick the box. You need to shout for your health.  Take a plain speaking friend/representative with you if necessary." Community member, skin cancer forum

If you’ve been affected by some of the issues in this blog, why not start a discussion in one of your forums now? If you're new or haven't joined any forums yet, you might want to get started by introducing yourself in the New to the Community forum.

You can also comment below, or contact the Community team by email at community@macmillan.org.uk

The Macmillan Support Line is a free and confidential phone service for people living and affected by cancer. If you need to talk, we'll listen. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

Macmillan has further support and guidance around diagnosis and waiting for results including practical tips on talking to healthcare staff.

Struggling to get a GP appointment? Read the Macmillan blog here with hints and tips.