Patient Experience Survey

Transcription

1 Patient Experience Survey NET Patient Foundation

2 Patient Experience Survey Objective: To understand the challenges faced by NET patients in reaching an appropriate diagnosis and then accessing the care and treatments they require. Procedure: An online survey was compiled using SurveyMonkey. The survey was publicised online via and via monthly e-bulletins. Copies of the survey were also distributed at patient meetings around the UK. Response: To date, 201 respondents have taken part in the survey. All respondents completed the survey, although not all respondents answered all questions.

3 What kind of questions did we ask? We asked patients what their eventual diagnosis was, and a series of questions to find out about their route to diagnosis. We also asked a series of questions to find out about access to treatment and care, and how the various treatment options affect patients.

4 What type of NET do you have? Type of NET TYPE OF NET NO. OF RESPONDENTS % OF RESPONDENTS 13% Neuroendocrine tumour in the small or large bowel (carcinoid) % 1% 0% 2% Neuroendocrine tumour in the lung (bronchial carcinoid) Pancreatic neuroendocrine tumour 10 5% 33 16% 16% Unknown primary 4 2% 62% Insulinoma Paraganglioma Not sure 1 0% 2 1% 26 13% 5% Total % Neuroendocrine tumour in the small or large bowel (carcinoid) Neuroendocrine tumour in the lung (bronchial carcinoid) Pancreatic neuroendocrine tumour Unknown primary Insulinoma Paraganglioma Not sure

5 What type of NET do you have? 13% of respondents were unclear as to exactly what their diagnosis was. More than half of these said that they had cancer in the liver, but did not state where the primary disease occurred.

6 How long did you have to wait for a diagnosis? TIME TO DIAGNOSIS under 1 month 1-6 months 6 months to a year 1-3 years 3-5 years More than 5 years NO. OF RESPONDENTS % OF RESPONDENTS 34 17% 52 26% 19 10% 30 15% 25 13% 38 19% Total % At least 5% of respondents believe that they suffered from NET-related symptoms for years prior to diagnosis 60 Number of respondents under 1 month 1-6 months 6 months to a year 1-3 years 3-5 years More than 5 years

7 How long did you have to wait for a diagnosis? 2½ years despite several scans and consultations with specialists in gastroenterology. Only after an acute hospitalisation with the diagnosis, volvulus, and the following operation was neuroendocrine tumour of the appendix discovered. I had pain in the region of the tumour for around 20 years and was treated for endometriosis. They said the sweats were first stress and later the menopause. I almost died with a bowel blockage before it was diagnosed - by then I was really ill and everyone thought I was going nuts. When the tumours became critical by obstructing the blood supply, the diagnosis came quickly. However, I had been struggling with increasingly severe symptoms for up to 10 years. Nothing showed during numerous tests despite increasing desperation on my part. 15 years suffering from abdominal pains - always left untreated and undiagnosed. I m a radiographer. I found my tumour by accident when I tested the MRI scanner using myself as a guinea pig Steve, aged 48

8 How many times did you complain of symptoms to your GP before you were diagnosed/referred? Of the 30 respondents who did NOT visit their GP prior to diagnosis, over 50% were diagnosed with a neuroendocrine tumour as an incidental discovery during scans or tests for other conditions. Zero (several) 8+ (numerous) Can t remember NO. OF GP VISITS NO. OF RESPONDENTS % OF RESPONDENTS 30 15% 38 19% 27 14% 37 19% 64 32% 3 2% Total % 70 Q3. GP visits prior to diagnosis/referral No. of respondents Zero (several) 8+ (numerous) Can t remember

9 Were you being treated for the wrong disease before you were diagnosed, and if so, what were you being treated for? Was told I had pleurisy, appendix problems, cysts due to obesity. Was also told I had family problems and that I needed to see a clinical psychologist. Ye s NO I was treated for asthma. High blood pressure spikes were ignored. I was told I had menopause symptoms even though I had been on HRT for year years. I was treated for IBS and told I was paranoid. 39% My last specialist told me I was constipated and to eat prunes. 61% Gallstones. Subsequent removal of healthy gallbladder. I was treated for acid reflux, but knew that was wrong.

10 Were you being treated for the wrong disease before you were diagnosed, and if so, what were you being treated for? Value Title Asthma Gallstones Gastric ulcer IBS/Crohn s disease Indigestion Menopause Other gastrointestinal Other Psychological disorders

11 Do you have confidence in the team looking after you? Of the respondents who said they had confidence in their team, over 50% added that they had only had confidence that they were being cared for properly SINCE being referred to an MDT. Ye s 12% 88% NO

12 Do you have confidence in the team looking after you? Yes, the whole team is very supportive and answer any questions very openly. The specialist nurse is always available and will answer her mobile phone as soon as possible. I have huge confidence in my current team, but none at all in the diagnostic process. My life before diagnosis was miserable and I felt that no-one took my distress seriously. I do now, they are very good and I can ask them anything. I called in on spec one day and was ushered into the NET nurses room. I have no confidence in my GP and don t think they have a clue. Thank God for the NET clinic. Not really. They have been screening and testing me for 5 and a half years with no success. I have every confidence in the oncology team at my local cancer centre and more recently, the specialist team at the Royal Free. I have had every possible support, i.e. monthly octreotide injections at the local hospital; referral for psychological support from Macmillan; referral to other specialists for related issues such as hyperthyroidism; excellent GP support and referral; regular CT scan, nuclear scans, echocardiograms and blood tests to monitor progress of cancer; colonoscopy, ultrasound scans and healthy bacteria breath test to check on other symptoms; ongoing search for reasons for my unusual and severe fatigue, and not least of all, fantastic listening, understanding and positivity in all consultations. I cannot praise these wonderful people enough from the caring, friendly nurses to the committed doctors.

13 Have you had difficulty getting access to treatment or getting the treatments your specialist wants to prescribe you? Ye s No 11% 89%

14 If you are having, or have had, difficulty gaining access to treatments, please state why Number of respondents My local PCT won t fund the treatment The treatment is not licensed My specialist will not prescribe the treatment Lack of awareness of treatment options

15 Diagnosis and referral to an MDT is not the end of the road for most NET patients. Many patients go on to live for years, undergoing treatments to help manage their symptoms. How does this affect them?

16 Very hard to say as I am quite symptomatic even after treatment (Yttrium 90). I was quite poorly but I was then diagnosed with hypothyroidism, as this is a hormonal cancer. I feel this is related and I also have pellagra. very severe abdominal pain DVT and pulmonary embolism Creon caused constant nausea Have not had treatment other than initial surgery. In the 'Leave well alone and observe' bracket. But definitely feel affected by mood swings. My doctor says this is not from NETs, but not sure can go from being high as a kite to crying in seconds and for no explanation Diarrhoea and lack of appetite Lethargy After Lutetium treatment I feel sick for a while and a little low in mood. Nothing too bad. Flushing, stomach cramps, pain after eating, night cramp Lack of concentration nausea, headaches, tiredness I am sure there is something in the Sandostatin LAR which makes my system jolt when I try to sleep and it makes me very tired. My skin itches a lot as well and I often feel sick when using the toilet. I think I have been having side-effects from the high serotonin levels very bad wind Surgery has left me diabetic and needing enzymes to digest food. Diabetes is insulin dependent and unstable but have been given an insulin pump which is helping although local PCT won't fund a continuous glucose monitor.

17 With my digestive system post op. it has a mind of its own! Chemo made me very ill indeed. I couldn't get out of bed or eat solids for a whole week after each session. I am certainly unusual in suffering with such severe fatigue at this stage of the illness but no-one really understands why, apart from the thyroid problem Not really except pain from injection that can last up to 10 days Not sure but think my hair may have darkened and my teeth became very stained I get dizzy with the daily Octreotide but I'm fine with the monthly ones First shot, 30mg- Nausea for three days and diarrhoea for three weeks. Second shot 20mg, nausea one day and constipation. Shot three, no nausea and mild constipation. unexpected dehydration with first course of cisplatin for which I was not prepared Cramp with certain foods. Smelly stools. Extreme tiredness and sickness Feeling faint, chronic diarrhoea Various - pains in shoulders, sickness, abdominal pain, hyper/hypos constantly, persistent tachy of heart, many more Many lumps from Lanreotide injections,carcinoid crisis each time I have embolisation. Liver abscess A wart on my finger disappeared when I started the monthly Sandostatin injections. It had been there a number of years..! Hormone extreme highs and low. Can feel calm content and happy but cry constantly for no reason. Common side effect but diarrhoea very erratically and badly, can have liquid pour from my bowel with only moments warning