The diagnosis came as a bit of a shock as Dad is not a big man, more tall and slender. He doesn't drink a lot and while his diet could be improved its not a major concern.
The tablets seemed to do the trick initially.. Dad felt more human but a couple of months later his health started going downhill. He started losing weight but as it was a small amount it was put down to the medication. Dad was diagnosed with a hiatus hernia many years back but had never really had any problems. Now it was flaring up. Again it was put down to the medication and he was told to increase his lansoprazole (which reduces acid)
This continued for a while but parents being parents, didn't really want to make a huge fuss. Dad had returned to work but was finding each day a struggle. He felt the cold so much more and working in a warehouse with the main doors open meant he'd come home aching with coldness.
Mum bought him thermals, gloves, hats but it didn't make a lot of difference. Gradually each day became harder. He'd come home, every part of him aching because he was so cold. We finally got him to talk with work and they were brilliant and wanted to support him in any way they could.
Dad did some work in the office where it was warmer but he was still aching and after falling asleep at work one day, he realised that he needed to get to the bottom of what was happening.
Dads GP is a lovely man but you get the impression that there is no urgency. Things seemed to be put down to side effects of the medication. I even visited the GP to voice my concerns that Dad was also heading down the depression route (something I had discussed with Dad already) and while he tried reassuring me that he had Dads best interests at heart, it didn't feel like enough was being done.
In the end, Dads work referred him to the company doctor (November 2010). He received a thorough check up and the doctor wrote to Dads GP as the examination showed that Dad was tender in the upper abdomen, especially on the left side in the upper region of the abdomen. The company doctor was concerned it was a gastric cancer and also noted this in the letter to the GP (as Dad was due to see GP later in the week).
He also confirmed that the diabetic medication Dad was prescribed should not be taken if you have hiatus hernia. This prompted a very quick change in medication from the GP.
In the meantime Dad had a referral to a consultant (in elderly care /general medicine) to discuss the diabetes and the continuing abdominal pain. He was also referred for an endoscopy after which they diagnosed him as having Helicobacter pylori (H.pylori) which is a form of bacteria in the gut. A course of antibiotics was started but by the end it hadn't made a lot of difference. Dad was now starting to lose sleep because he was in a lot of discomfort.
As with any clinic you are weighed prior to seeing the consultant. Dad went into this little room and sat on the scales. Unsurprisingly he had lost more weight which to him and us as a family is very worrying. To the nurse it seems, a chance for a bit of banter as she told Dad he had lost weight and how she wished she could lose weight that easily. Totally unprofessional and a complete lack of empathy. Dad just politely nodded and sat back in his seat, looking pale and withdrawn.
KD was concerned that Dads diabetes was not being controlled and that this wasn't a simple case of age related diabetes.
By this point Dad had been experiencing pain in his lower back which was concerning. He'd also been signed off from work. I asked if Dads bloods had shown anaemia. KD asked why I wanted to know this, to which I explained that as Dad was not able to eat much food and was losing weight, whether he was also losing nutrients which could lead to things such as an iron deficiency.. The answer to this was no Dads iron levels had not been checked and he doubted that Dad was anaemic.
KD had previously referred Dad for an ultrasound to see what was happening but this didn't throw up anything concerning. It was decided a CT scan would be done of his abdomen and pelvis (with contrast).. Waiting for the results was agonising and in the end Dad went back to his GP because the pain was increasing in his back.
Dad was prescribed pain relief and the GP said he would chase the hospital for the results because the symptoms were now pretty worrying...
Later that day, the GP came to the house. He'd been faxed through the results from the hospital and wanted to tell Dad in person. The CT scan showed a mass on the pancreas which could potentially be cancer so the GP had requested an urgent referral to another consultant (upper gastrointestinal surgery)
While it was supposedly an urgent referral because of Dads symptoms, Mum had to keep chasing the hospital.
Eventually she went into the hospital and spoke to a lady from PALS (Patient Advise Liaison Service).. It was at this point my faith in PALS dropped! The lady told my Mum the delay was down to the GP surgery as they have to fund the referral and this hadn't been signed off. She then told Mum that an appointment should be out the following week.
What has angered me is that PALS are there to support the patients but instead it felt like they were just joining in on the blame game. Mum didn't need to know it was down to funding etc, she just needed to know that Dad wasn't just being forgotten.
On the 22nd February (2011), Dad finally saw the consultant (IP).. The CT scan showed an extensive calcification of the pancreas with a dilated duct down to the head. IP went onto explain that Dads pancreas were in a right mess and expected it to be pancreatitis. To confirm, he wrote to his colleague (SS) to ask for an urgent endoscopic ultrasound (EUS) biopsy.
The EUS biopsy was scheduled for 1st March 2011 and Dad had to be in the day surgery unit for 12noon. Building up to the day was a big thing for Dad. He hadn't felt well for a long time and just wanted answers. He was all gowned up and had been given prophylactic antibiotics in readiness for the biopsy.
Unfortunately the machine broke down so at 4pm, Mum was called to come and collect him. Arriving at the hospital, she found Dad standing outside the main entrance, looking cold and disorientated.. Seems unless you've had the actual procedure, you are left to your own devices...
No-one could give any updates and could only say that the biopsy would be rescheduled in around 2 weeks.
The biopsy was rescheduled for 15th March 2011 and this time everything went to plan. A follow up appointment was made for the 24th March 2011 to discuss results. Dad was prescribed Creon 25000 which help with the digestion of food in conditions where there is reduced production of digestive enzymes by the pancreas.
However, when I checked the manufacturers Patient Information Leaflet, it stated that “Do not take Creon 25000 if: Your doctor has told you that you are in the early stages of inflammation of the pancreas (acute pancreatitis)”
I called IP's secretary who then referred me to the specialist nurse. She said that this was the first she had heard of such advice as it had not been on the information leaflet before. She reassured me that Dad was ok to continue with the medication and that he could double the dose if things didn't improve.
Dads BMI before he became ill was 21.5, now it's 16.3... According to the NHS BMI calculator this is underweight. He has lost a majority of his appetite and although he is on Ensure shakes, its not helping with the weight.
His pain levels have been hard to control. He is currently on Tramadol but is taking the maximum allowance on a daily basis. Due to the pain levels and the effects of the pain relief he can no longer drive. He has gone from an active, outgoing man to someone who is very withdrawn, has little interest with anything, has disturbed sleep patterns and is in so much pain he can't see any light at the end of the tunnel.
Dad was scheduled to get his results on the 24th March 2011 and as you can imagine, it had felt like a long time coming.
I had packed my case ready to go down to my parents the night before the appointment. I was just finishing off a coffee and walnut cake for my Dad as his birthday was also approaching when the phone rang....
It was Dad to tell me that his appointment had been cancelled. It seems that the appointment was made for the consultant (SS) who did the biopsy when it should have been made for the other consultant (IP).. However IP was on holiday until the following week so Dad was just told that another appointment would be made on his return.
The following Monday Dad was expecting a phonecall to update him but heard nothing so on Tuesday morning Mum called IP's secretary. Seems they'd only got back that day and Mum explained that Dad seemed to be being punished for a hospital error. The secretary said to go to clinic that day and while there may be a wait, she'd get Dad seen.
Off to the hospital my parents went and clinic was already running about 90 mins behind. They eventually got to see IP and were given the results in a very short and abrupt way...
Dad has pancreatitis and gall stones. Treatment would need to be discussed with a possible view to remove the gall bladder. The medical team were going to meet w/c 4th April 2011 to discuss Dads treatment plan and would let him know in due course... No follow up appointments, just a kind of don't call us, we'll call you cavalier attitude.
So what I don't get is this; if this was the jist of the appointment, why couldn't the original appointment have been kept for Dad. According to the hospital consultant directory, these consultants are both specialists in upper gastrointestinal surgery. While I apprectiate that IP was Dads main consultant, SS could have still done the same job....
We've now arrived at this week and it seems Dad now has another hurdle put in the way.... IP called yesterday morning (5th April 2011) to speak to Dad.. He is now being referred to another hospital and will be having another endoscopy.
Dad, unfortunately, due to his level of pain, lack of energy and general well-being (or lack of it), didn't quite take it all in... He even confused the name of hospital he's being sent to with the local council building. He doesn't know why he is being referred or why he has to have another endoscopy.
Dad is being passed from pillar to post and in the meantime his health is deteriorating to the point where I now firmly believe he is clinically depressed. I have discussed this with his GP but it seems the medical team as a whole are taking a pretty laidback approach.
I would have hoped that given Dads poor health, they could have at least admitted him for tube feeding to give his pancreas a rest while they refer him to this other hospital. He desperately needs his pain levels under control along with his sugar levels. He feels that trying to control his diabetes is a losing battle.
I believe taking him in and tube feeding him along with giving pain relief and IV fluids will at least give him some respite. While he was diagnosed with type 2 diabetes last year, given his now diagnosis of chronic pancreatitis, I would suggest he is more likely to have type 1 diabetes and needs insulin injections.
With chronic pancreatitis, it is chronic inflammation of the pancreas which results in irreversible damage. One of the complications is Pseudocyst which is where pancreatic fluid collects as a cyst due to a block in pancreatic duct. Dad had already been told that there is a possible build up of fluid.
Today (6th April 2011) a letter has arrived at my parents - It is a copy of the letter sent from IP to Dads GP. My bro has scanned and emailed it over to me. It mentions that EUS showed some lymphadeopathy but overall are considered to be of an inflammatory nature rather than malignant. The pancreas are confirmed as being atrophic with a dilated duct containing stones and evidence of sludge and stones within the gall bladder.
IP states that there is a strong case for laparoscopic cholecystectomy but is likely to benefit from a pancreatico-jejunostomy as well. Again it seems to contain information that has not been explained to my Dad or if it has, not in a way he could take it onboard...
The letter ends with the promise that IP will contact Dad after the MDT (Multi-disciplinary team) discussion. I thought this is what was going to be happening this week just before IP called Dad to say he was being referred to another hospital.
Its got to the stage now where I need to kick ass with the medical team because Dad cannot simply go on like this.. He has even stopped testing his blood sugar levels because he cannot see the point as they just aren't being controlled plus he only really has ensure now because he has so little appetite. He more or less vomits on a daily basis which makes the pain worse..
It seems to have been one hurdle after another and Dad has no more energy or will to fight... Enough is enough!
UPDATE (6th April 2011);
I called IP's secretary for clarification of procedures and whether the referral to another hospital was still going ahead. The referral is to another consultant at another hospital.
The hospital in question has a regional Hepatopancreaticobiliary Unit (HBP) and while IP is involved with the HBP team, he doesn't perform these procedures hence another consultant (TW).
IP's secretary went onto explain that as we were talking, Dads letter was being typed up for the hospital and would be faxed over before she left the office today. Dad needing another endoscopy is still a possibility. It all depends on TW's preferences, whether he feels that he has enough information to do the procedure, or whether he wants to investigate further.
I explained that Dad's pain levels were not being controlled and that he has signs of clinical depression but was told this was a matter for Dads GP. I explained that we were kind of hitting a brick wall where that was concerned and that even though the letter stated Dads pain was being controlled by Tramadol, this wasn't the case. I suggested that this has been going on for too long, that Dads mental and physical health is deteriorating and he needs some support.
I didn't need to know about her workload, or about other patients. Why do I need to know that? Was it to try and get across just how busy hospitals are... yup I'm already fully aware of how busy hospitals are just as I'm aware of how much pain my Dad is in.
Its about communication and ensuring that a patient understands the full capacity of whats happening and why.. Not just giving them a quick run down wham bam thank you ma'am...
I've since called Dads surgery and asked for a home visit. I've asked the GP to review his medication and look at possibly switching him to a morphine patch. With Dad being sick all the time, there's no guarantee that he can even keep pain relief down. I've also asked if the GP can do a formal diagnosis of clinical depression and to treat accordingly.
I'm hoping that the next couple of days starts to bring some solutions rather than more hurdles....
UPDATE (13th April 2011);
The GP came out literally 30mins after I had called the surgery. He didn't want to go down the route of diagnosing Dad with depression and putting him onto more pills. He felt that Dad was withdrawn because he feels so ill. He asked if Dad felt he was depressed to which he replied no. In regards to the patches, the GP explained that you can still have sickness even with patches. He's prescribed anti-sickness tablets (Motilium) 3 times a day. He has also put Dad on slow release Tramadol which he takes twice a day and can also top up with regular Tramadol a couple of times in the day if needed.
There has been no word from the hospitals (the original one nor the one Dads being referred to) and so Mum did some chasing today......
First stop was to the new consultants (TW) secretary, who confirmed that the paperwork had been received last week. When Mum asked about the endoscopy, TW's secretary said she was just about to deal with that but as she had Mum on the phone, she could transfer her through to the clinic to make the appointment. Appointment??? What happened to communicating TW's preference first... We were waiting to see whether TW wanted to do the endoscopy first (and to be honest, we were hoping he wouldn't need to and they could get on with treating Dad)...
The earliest appointment the endoscopy clinic had was 19th May 2011 at 9.30am. Mum was shocked at how much longer Dad will have to wait, even though he is in a lot of pain, is not eating much and his BMI just gets lower.
The earliest appointment the endoscopy clinic had was 19th May 2011 at 9.30am. Mum was shocked at how much longer Dad will have to wait, even though he is in a lot of pain, is not eating much and his BMI just gets lower.
Mum said to book the appointment but explained as the situation was urgent, she would discuss with Dads medical team. She called IP's secretary who said she needed to speak with TW's secretary. Mum calls TW's secretary and explains how poorly Dad is, his level of pain and how long this has been going on. TW's secretary promises to look into and call Mum back.
During the call back, TW's secretary explains how she has tried as much as possible to help but can only bring the endoscopy appointment forward by 1 week... to 12th May.
This more than likely means that he'll have the endoscopy on the 12th May 2011, then have to wait a week for the results to go through to TW, wait for TW to look at the results and make his decision. It wouldn't surprise me if this drags on until around June time...
It also seems that TW is not around at the moment but no-one is sure where he is, whether he is on holiday or at another hospital... In other words, they don't know their ass from their elbow...
This more than likely means that he'll have the endoscopy on the 12th May 2011, then have to wait a week for the results to go through to TW, wait for TW to look at the results and make his decision. It wouldn't surprise me if this drags on until around June time...
It also seems that TW is not around at the moment but no-one is sure where he is, whether he is on holiday or at another hospital... In other words, they don't know their ass from their elbow...
So for the meantime Dad remains in pain, unable to sleep, unable to work, unable to eat, feeling so ill and isolated.
Mum is starting to feel that they are just dragging their heels, that because of Dads age he's not considered a priority. She's also concerned that he'll end up losing so much weight that they'll refuse surgery on the grounds that he's not fit enough for it...
I just want the hospital to start taking some bloody responsibility, to stop playing ping pong with my Dads health and get this sorted!!
Angry?? I'm fecking furious!!
Mum is starting to feel that they are just dragging their heels, that because of Dads age he's not considered a priority. She's also concerned that he'll end up losing so much weight that they'll refuse surgery on the grounds that he's not fit enough for it...
I just want the hospital to start taking some bloody responsibility, to stop playing ping pong with my Dads health and get this sorted!!
Angry?? I'm fecking furious!!
UPDATE (20th April 2011);
I spoke my youngest brother tonight.. I was at the launch of a patient support group for people with rheumatoid arthritis and afterwards noticed about 5 missed calls from him..
Calling him back, he seemed very scared. He said Dad was getting worse, his weight loss was worrying and that the doctors didn't seem to be taking things seriously. He didn't know what else to do and asked if I could help some more. I said I would get onto it first thing (by this time it was 10pm)
UPDATE (21st April 2011);
I spoke my youngest brother tonight.. I was at the launch of a patient support group for people with rheumatoid arthritis and afterwards noticed about 5 missed calls from him..
Calling him back, he seemed very scared. He said Dad was getting worse, his weight loss was worrying and that the doctors didn't seem to be taking things seriously. He didn't know what else to do and asked if I could help some more. I said I would get onto it first thing (by this time it was 10pm)
UPDATE (21st April 2011);
Today I am driving down South to try and get Dad properly diagnosed and treated. First job of the day is to phone the hospital and if I have to rant and rave, then so be it.. Dad can't go on like this....
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