A blood clot in my leg (DVT)

What was good:

– after I was re-measured, I was really upset that I could not get help from hospital; but my GP got me access to the correct sized RAL class 2 stockings to help me avoid post thrombosis syndrome.

– my physio returned my telephone call to give me new exercises when I got stressed about my walking not improving.

– Until December 2012, my GP had a superb computer booking system that allowed patients to book online. And view appointments online. It was invaluable throughout the INR testing.

– The convenience and ease in that INR testing could be done through my GP surgery, rather than needing to visit Addenbrookes.

What could have been done better:

– A and E or my GP or CamDoc could have taken my symptoms seriously, and helped me get an earlier (DVT) diagnosis. I was in a lot of pain, for a five-week period. And my leg was swollen and useless for months, possibly as a result of the delay in getting access to warfarin treatment.

– Addenbrookes Thrombosis Treatment Team/Anti-Coagulation Team could have given me access to a DVT Consultant, or someone that could examine my leg, explain my DVT and help advise what was stopping me walking. My leg was swollen, cold, bent, and I could not move my toes.

– Other than the first ten days when I was visiting the TTT and could ask the nurses questions (they just told me that everyone was different, and some people can’t walk, and when I mentioned chest pains and my other leg also being swollen and hurting, they told me it was unlikely I had another clot and failed to help me), I had no access to care/advise during my three months on warfarin and that made the whole process a lot more stressful than it needed to be.

– Addenbrookes could have had a DVT Consultant talk to me, and discuss my treatment, and concerns, before sending out a standard letter to take me off warfarin, without any interaction with me over a period of months.

– My walking got worse after I discontinued warfarin, and I had no contact to seek help, guidance or advice.

– Bupa could have communicated promptly with the Thrombosis Treatment Team to make sure that I got access to the treatment that I needed.

– My GP could have liaised with me regularly, and kindly. Rather than initially shouting at me, then at subsequent appointments watching the clock during appointments, and at another appointment suggesting taking away an MSK referral when the nurse insisted that I see a GP for chest pain.

– My GP could have retained their – superb – online booking system, after the December 2012 computer upgrade.

KateH

Thank you to the walk in centre & Whiston hospital

I returned froma European coach holiday on at the end of August this year, 62 hours and almost 3,000 miles on a coach totally unsuitable for such travel – cramped and uncomfortable.

Two days later I began to experience sharp pains in my calf and I attended the St Helens NHS Walk-In Centre where I received prompt and thorough treatment. They arranged for me to attend at Whiston Hospital the following day for a scan which confirmed thrombosis. This was in the minor veins but dangerously close to a deep vein.

They immediately arranged a course of treatment – injections in my stomach daily for six weeks.

I dread to think what the consequences may have been had they not acted so promptly and efficiently at the Walk-in Centre and at Whiston Hospital. My heartfelt thanks

Papa Joe

Diagnostic Obsession & DVT

In 2002, after two 12-hour flights to and from Australia via Hong Kong I went to the doctor feeling a bit under par and with a pain in my left calve muscle. The doctor felt my leg, then said that sometimes they never knew what was wrong with people. This doctor has since retired but in my opinion his negligence nearly killed me. Over the next two years I flew a lot on business. I continued going to the doctor, feeling generally ill. By the summer of 2004 I was intermittently in intense pain for very short periods, but for no more than a couple of minutes. I was cold almost all the time and I had no energy. I enjoyed cycling, but by Christmas 2004, at the age of 43, found it almost impossible. My feet were incredibly cold. By this time after most flights I vomited every evening I got to my hotel and felt depressed, slow and generally as if I was dying. Which I was. I went to my GP practice again and again. Two more doctors found nothing wrong. One was obsessed with the idea I might have testicular cancer, despite the fact I was about 20 years older than the most at-risk group. His idea of testing for this was to squeeze my testicles very hard. It was extremely painful and diagnosed nothing at all. I also another who went along with the view that there was nothing much wrong with me, especially in view of the fact that I could cycle 20 miles even if I felt ill doing so.

At Christmas 2004 I flew to Portugal then drove to North Wales and back and felt dreadful all of the time. I could not walk due to the pain, but only for say half an hour, then I was OK again. I was freezing cold all of the time, even sitting in front of a fire, with three jumpers on.

On January 12th 2005 I was admitted to hospital with multiple iliac DVTs. I spent eight days in Ipswich hospital, including over 24 hours on a thrombolysis machine to dissolve the multiple blood clots in my iliac vein. I was told my situation was, in the words of the triage doctor, “grave” which I had already gathered. When I was admitted my left leg was bright pink and a third bigger than my right leg.

I was put on a mixed ward and was the youngest patient by more than 20 years. There was no possibility of rest on this ward. The person next to me was on a ventilator and the old lady opposite screamed for most of the night that she had been kidnapped and was being held in hospital against her will, along with the invisible dog on her bed. The food was almost completely inedible. I was mobile prior to the thrombolysis but on visiting the toilets and finding full cardboard bedpans left uncovered on the floor of the WC wished I had not been.

The nurses in charge of the thrombolysis machine had never used one before, according to them.

I was eventually rescued from a lifetime on couperin/warfarin by a fantastic surgeon, Mr Osman, who gave me the option of having an iliac stent. I took this and was operated on in May 2005 successfully.

One simple blood test in 2003 to diagnose I had a DVT after that first long-haul flight could have saved me three years of pain and illness. I told the surgery doctors repeatedly that I flew a lot for business. I did not even know of the existence of a blood test until after I was in hospital. I was eventually diagnosed as having between three and five separate DVT blood clots – either one and two record-breaking huge ones or five normal sized that had impacted together. Either way, listening to me as a patient and doing a simple test based on diagnostic evidence would have saved my health and a lot of health service resource. I am fine now, but I lost three years out of my life because of refusal of my general practice to listen to me. In my opinion, between them they nearly killed me, and it is no thanks to them that I am alive.

Cycle Pilot

I was assured about my surgery

After having an appointment with Mr Baxter at the Jessops Hospital Sheffield I then attended gynaecology for a pre-ops assessment before surgery at the Royal Hallamshire. On the 20th July I had an appointment with the anaesthetist Dr Webster who was very informative and assuring about my forthcoming surgery. On the 26th July on Ward 2 of the gynaecology department I received an injection in the stomach because of my thrombosis condition. On the 27th July at 9.30am I was admitted to ward 1 in gynaecology where I found my bed with a theatre gown, paper, knickers and theatre stockings. I went down to theatre at 1.00pm and came back at 4.00pm. It was perfectly alright. Mr Baxter visited at 6.00pm. I stayed overnight after receiving another injection for my thrombosis and I went home on the 28th July. I would like to say thank you to all the staff.

Nectar182

Hip replacement at Wythenshawe

I had a hip replacement in 2008. The operation was cancelled twice. The third cancellation was on the day of the operation by phone. When I complained they said they would call me back. They said they had found me a bed, but not on an orthopaedic ward. I had no idea of the significance of this and was glad to accept. The operation went as planned. However the nursing care after this was not adequate. I could not move without the help of a “monkey ring”, was left lying in the bed. I had bed sores within 24 hours. My son insisted that I be moved to an orthopaedic ward. I was moved after three days, in great pain. The DVT stockings had not been replaced after the operation and I developed DVT. After 5 days I had a pulmonary thrombosis in the middle of the night. The response to this was very quick and very efficient and I know that they saved my life, but I am sure that I would not have developed this if my nursing care immediately after the operation had been adequate. I then became very anaemic. A family member (a practioner nurse) drew their attention to my low blood count, as no one else appeared to have noticed. I was then given a blood transfusion. After 12 days I was finally discharged. I felt relieved to get out of the hospital.

Rose Mary

Good care but in a mixed-sex ward at Rotherham

I was admitted to the Rotherham District General hospital in February of this year, for 4 days. The doctor thought it could be a clot or thrombosis in my right leg. The district nurses are attending me for ulcers in my leg.

The care was good; the ward was clean; the food wasn’t bad but it could’ve been better.

The toilets were clean, but I didn’t like the fact that they were unisex. I also don’t agree with the use of mixed wards.

Fountain309

I was treated very well

My neighbour called 999 as I collapsed. I was completely dehydrated from diarrhoea and sickness. I was taken to the Northern General A&E. I was in for twelve days isolated in a room to myself. I was very well cared for and impressed by the standard of cleanliness. Everyone from the ambulance men to the nurses, doctors, consultants and not forgetting the cleaners were extremely kind and supportive. I returned home after twelve days and had to call 999 again ten days later with chest pains and was diagnosed with pulmonary thrombosis. Again I was well cared for as everyone was very kind and the standard of cleanliness was high. I was in for 12 days and am now home again and am on Warfarin. I was scared when I went in because of all the negative things you hear about NHS hospitals these days, but I was very grateful for the way I was looked after. There was no hanging about as I was attended to very quickly on both occasions. I was treated very well and my thanks go to everyone.

Late463

“I cried for them” – Northern General

In May I had blood clots/ thrombosis in both legs I was admitted to the Royal Hallamshire on ward Q1.

The doctor’s team was very good but I think there should have been more care for older patients.

There was no point when I was embarrassed but for 2 other patients I got very upset, I cried for them.

I would like to thank the Doctor’s team and the day nurses on Q1.

GDFP019