A leading UK blood cancer charity is ringing the changes for how we seek help in times of need, urging people to avoid putting their mental health at risk by ditching screen support in favour of the telephone.

Leukaemia CARE has launched its ‘Call on Us’ campaign, which encourages patients, relatives and friends to pick up the phone and chat through how they are feeling about the impact of blood cancer on their lives, rather than relying on the internet.

The campaign comes after the charity noticed the number of calls to its Care Line drop by more than half in four years, despite 40,000 people being diagnosed each year with a blood cancer or allied blood disorder, with the commonest ones being leukaemia, lymphoma and myeloma.

However, with respondents to a poll1 admitting that they were kept awake at night by worries including whether they were going to die (54%), how quickly the disease would progress (63%), whether the disease would affect their quality of life (44%) and how their family will cope with their diagnosis (44%), experts at Leukaemia CARE say that it is only through verbal contact that those touched by cancer can have their fears properly allayed.

They are also concerned that the general public are using the internet to self-diagnose with 85% saying they have looked up symptoms online. As a result of doing this, 38% say the wrong diagnosis made them panic and stressed them out, 32% wished they had never done it as what they read on the internet made them feel they had something serious when they didn’t and 29% would never Google their symptoms again, concluding it’s much better to just go to the GP.

To show our support for ‘Call on Us’ campaign PatientTalk.Org conducted an interview with Esther Wroughton (care director at Leukaemia Care) and Manos Nikolousis who is consultant haematologist at Birmingham Heartlands Hospital.

Question: What is Leukaemia?

MANOS NIKOLOUSIS – Leukaemia is a form of blood cancer which mainly affects the bone marrow of the patients. Within the term ‘Leukaemia’ there are different sub groups. The word comes from the Greek word where ‘leuk’ is ‘white’ and ‘aemia’ is the blood. It is a cancer of the white blood cells.

Question – How is this different from Lymphoma?

MANOS NIKOLOUSIS – Lymphoma is considered a blood cancer, but in most cases it actually starts from the Lymph glands. We have different Lymph glands in our body (in our neck, armpits, chest, abdomen and groin). Whilst Lymphoma tends to start in the Lymph glands, it can occasionally spread to the bone marrow or other organs as well.

Question – What are the signs and symptoms for both Leukaemia and Lymphoma?

MANOS NIKOLOUSIS – Leukaemia usually affects the production of blood cells in the bone marrow. Within bone marrow there are three different types of cells; the red cells which carry oxygen to different tissues, the white cells which fight infection, and platelets which prevent bleeding and form a blood clot when we have a wound. When a patient gets Leukaemia, all three different cell lines can get affected at the same time.

Therefore the symptoms can be tiredness (because of the reduction of red blood cells), infections (because of the under production of and low quality of white blood cells) and bleeding problems in the form of bruising around the body or nose/mouth bleeds.

With Lymphoma, this is slightly different. You might not have any symptoms, or you might notice symptoms including a swelling around the neck, night sweats or weight loss. If the Lymphoma has spread to the bone marrow, symptoms can be similar to leukaemia.

With both these conditions, patients can get tiredness and often describe their condition as feeling under the weather. Until the tests are done, it is hard to diagnose the symptoms, which is why from a clinical perspective it is extremely important to really listen to your patient and try to understand their symptoms when they come to your clinic.

Question – Is the NHS up to speed on cancer patient diagnosis?

MANOS NIKOLOUSIS – We are certainly getting better. This is shown by the amount of blood cancers that are diagnosed per year, which is a gradual increase year by year. We are getting better at diagnosing these blood cancers and also in giving patients the right treatment to get the best outcomes.

Question – Do you think there is room for improvement and if there is how can it be improved?

MANOS NIKOLOUSIS –

There is always room for improvement. Over the last twenty years, there has been a massive improvement in the risk specifications for haematology patients as well as their outcomes. Over the last ten years there are new molecular markers and new prognostic markets for Leukaemia and Lymphomas. We can also identify the patients who are not going to do very well and can identify the best treatments for them. Equally for those who are expected to do better, we can give them less intensive treatment and therefore try to minimise the risks from this. We are much better in offering the patient the best care.

Question – How effective are the treatments in the NHS compared to those in Spain?

MANOS NIKOLOUSIS – I’m not an expert on the Spanish healthcare system. However, over the last three years, the introduction of the cancer trust fund within the NHS means there are more efficient drugs and more treatments available here than in other European countries. The NHS is one of the healthcare organisations where clinical trials are important, which enables the novel drugs. It also allows us to see whether certain treatments work better than previous treatments.

Esther from Leukaemia Care

Question – What are your major criticisms of Cancer policy in the UK?

ESTHER WROUGHTON – Nationally, there are a lot of questions about cancer policy in the UK with the cancer reforms and cancer policy. I think that will become apparent throughout our news channels and we will find out a bit more about this throughout the year.

Question – Why do people use the internet for diagnosis?

ESTHER WROUGHTON – We all use the internet to search for things whether it be for shopping or to look up symptoms.

Leukaemia Care conducted a survey which highlighted that 85% of the population go online to look up their symptoms and that there is a trend to self-diagnose and to get support online. When searching for information about symptoms on the internet, there is a risk of putting two and two together and coming out with five or mistakenly thinking that your condition is less serious than it actually is and not getting prompt medical attention.

Therefore, we are launching the ‘Call On Us’ campaign to highlight the importance of talking to somebody, picking up the phone and making a call. The internet certainly has its place; it is great for getting factual generic information but it is not specific to the individual and it can’t give you that personal touch and ask how you’re feeling today. Symptoms may be different day to day. Plus the impact of a blood cancer can affect not just the patient but carers and family members as well.

Question – Do you think that one of the reasons people are self-diagnosing is to do with massive wait times at GP surgeries?

ESTHER WROUGHTON – Potentially, I think that’s a good point but I also think that when we are at home in the evenings we can easily use our iPad, our mobile phones and digital devices. It’s important to be aware that you are not getting specific tailored information.

Question – Do you think that people are not picking up the phone because they don’t want to relay personal details to someone they do not know at the other end of the line?

ESTHER WROUGHTON – Everybody is different. Some people prefer talking to someone on the phone whilst others prefer sending an email or accessing our live chat online service. The recent survey showed that 54% of blood cancer patients are kept awake at night worrying that they were going to die, whilst 63% worry about whether their diagnosis would progress more quickly and how that would affect their family members.

I think initially people can be worried about picking up the phone but once they do ring our Care Line they find they are speaking to an expert; someone who knows what they are going through, someone who has been there themselves or are a carer of somebody who actually has a blood cancer. The feedback about the Care Line is that people do find it an invaluable service; they can be put at ease and find it valuable to have one to one contact which really does relay their fears when they get that appropriate advice.

Question – What advice do you give to somebody with leukaemia?

ESTHER WROUGHTON – Pick up the phone and call our Care Line. It is like having a conversation with your friend and you will get that personal touch. They will ask how are you feeling today, is your diagnosis affecting your work, do you need financial assistance, do you need more appropriate medical advice or more information on your diagnosis?

After visiting the hospital or the G.P. patients can often have questions they’ve forgotten to ask or perhaps they didn’t take on board all the information given to them. They can have questions in the middle of the night, in the evening or when they wake up. The Care Line allows patients and carers to ask those questions and we are available 24 hours a day 7 days a week.