What has your experience with the hea... - Living with Sickl...

Living with Sickle Cell Disease
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What has your experience with the healthcare system been like?

Has sickle cell disease hindered your ability to access healthcare? Is there a general understanding of the symptoms of sickle cell disease and its symptoms?

Share your experiences and interact with other members in the comments below! :)

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Having Sickle hasn't hindered my ability to access healthcare, it has made it difficult in some circumstances however I have a love hate relationship with the health care profession, I value and appreciate the work they do but i don't think they fully understand Sickle Cell and that bothers me a lot. Getting healthcare such as insurance is still a problem, there are still a lot of companies that wont insure you or your premium is very high. Otherwise with general healthcare such as the GP I tend to stick to one GP who I know or feel comfortable that they understand me and my condition. I avoid locum doctors and immediately get my back up if I sense they don’t know about Sickle Cell. Unfortunately having Sickle Cell isn't a blanket one fits all case, every person suffers in different ways, however I have experience doctors who have had to take out their medical books to confirm medication or have provided me with contradictory information from what my consultant has given me.

I believe there isn't a general understanding of Sickle cell and its symptoms, When I was pregnant the maternity department had a different approach and dealt with me just like the other pregnant mothers, this can not and shouldn't be the case. This continued throughout my pregnancy. It was quite frustrating.

Again with A&E admissions there is a big problem with what the protocol is for Sickle patients in crisis especially if you go via A&E. I feel there seems to be a lack of communication and understanding from many in the health care profession, which is disappointing in the 21st century.

As a Sickle patient I hold the knowledge and understanding of my illness and body and on many occasion have had to point blank say to many doctors what it is I need based on my own research and understanding.

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I was born in Angola and moved to Portugal just before I turned 6 years old. Haematology follow-up was done regularly in Portugal with specialist consultants.

Already in Portugal, there was little knowledge from the GPs. As there were several doctors in the family they always found a way to indicate THE reference haematologists in Portugal, not only in Lisbon but also in Porto and Coimbra. That also included hospital admissions away from home. Most times the local GPs would learned on the job about symptoms, followed the guidelines of the consultants on what to do and what to take.

My parents were always very proactive and never gave it a rest, not even when the doctors would say that there was little to do about it. Correspondence with the main reference centres in Canada, London and South Africa would give them clues on what else was out there.

Teenage years saw a massive change - my haematologist talked separately both to me and my mother about the importance of self-awareness, being able to take care of myself on a day to day basis, being more responsible for my own actions, taking medication, being aware that I must be independent and it's not my parents and family obligation to always take care of me while a go around careless about my own condition. That was a real eye-opening conversation and the first stepping stone to my independence.

Growing up was very rough and many times doctors wouldn't believe I have SCD even at A&E. I'm white, I have developed normally and I don't fall into the easy stereotype of a SCD patient. But I do have it!

At 25 I followed my haematologist to the Portuguese Institute of Oncology where I was followed by the haematology team within an oncology-focused hospital. The world was never the same again! It is a part private part public hospital but the healthcare personnel had special training in palliative care, with an equally major concern on your wellbeing and removing pain right in the beginning of treatment. What a difference!

They were always in line with the latest guidelines, home and abroad, and that's where I also started taking Hydroxyurea which really changed my life. Even living in the UK now I still maintain my follow up appointments there, I always carry copies of the examinations, blood tests and recommendations between the haematologist at the UK and in Portugal in case anything is needed when I'm there.

That's also the time when I noticed that even in countryside there was a much wider knowledge of SCD and haemoglobinopathies by GPs and medical students.

I also joined the Portuguese Association of Parents and Patients with Haemoglobinopathies (APPDH) and that helped in knowing more, exchanging experiences with other patients, knowing what it's like throughout the country and raising awareness.

A few years ago, I moved to the UK on a career move with my husband. No other family is here. I carried a large file with copies of the main documents needed for medical reasons and a letter of recommendation to the GP. I was lucky that my Portuguese haematologist took his PhD here in the UK and knows the system well. Still it was a challenge and a constant concern to get things moving.

At the medical centre in Berkshire there is little knowledge of SCD and there is no such thing as a follow-up as a chronic patient. No complaint whatsoever about referrals to consultants but a consultant is not for day-to-day care. And that is as important as A&E or specialized care.

I also find prescriptions very expensive. As a chronic patient who must take the same medication for a lifetime it doesn’t make any sense to only have monthly prescriptions and to have to pay 4 times more for the prescription than for the actual medication! Every month!

After a lot of conversations with the Portuguese haematologist, the UK haematologist and the Gastro consultant, I recently had my gallbladder removed. It required a lot of preparation to ensure that my haemoglobin level was topped up and that all necessary care was in place to avoid a painful crisis and whatever might follow but everything went very well. Perfect coordination between the Haematology and the Gastro teams here in the UK.

I was also invited to be part of a Haematology Tertiary Review Clinic where they look at you from a 360º perspective and send you for follow-ups with specialists in the most sensitive areas for SCD - heart, eyes, ears, bones, whatever may be relevant for you. Very good coordination.

Now that I have moved to Cambridge I’m looking for a GP with knowledge of sickle cell to register in my local medical centre and start all over again. It’s proving to be difficult and I’m trying to get information about it for 3 weeks now.

It’s never easy. It's a bit easier when they believe you and in the areas where there are more people with SCD the general knowledge increases. Other than that, it has to be you to take extra care and share the information. Plenty of room for improvement still.

Another patient mentioned health insurance - yes, a mirage! It's all very well until the day you may need it. I do have a corporate medical insurance but i haven't used it once. You never know if there is ever the possibility of things going sour and then you are off limits and with a huge account to pay. May be Ok for sporadic expenses but not for the all-round care an SCD patient needs. If it covers for oncology patients already why wouldn't it cover for other controlled and managed chronic diseases?

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Hi, you mentioned the expenses incurred for your prescriptions in the U.K. You can pay £110 in advance and that covers the cost of all your meds no matter how many you have for one year. Ask your GP or pharmacist for more information about this. Good luck.

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Thank you for the information. Even though I have asked no one told me about it and all the research I did revealed that only a small percentage of people with very low income, war veterans or cancer patients are entitled to any benefits.

I don't think it makes any sense to pay systematically for the same prescription for medication that you have to take your all life, most times the same dosage. There should be some kind of subsidy for long-term patients and repeated prescriptions. 110 pounds a year is still quite a bit of money. It only "pays off" if unfortunately you really need a lot of medication. On average I would say that I need 15 to 30 prescriptions a year. At least 12 are exactly identical so why have 12 prescriptions when it could be one?

It is what it is. Thanks for the info.

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Ok, I thought you might have various pain relief medications, penicillin, folic acid etc. I can see you point though. But just keep my info in mind in case you need more info. I wish you well.

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My experience has been mixed I have a team of regular doctors and nurses when at home whom know me well and help me a lot but when I'm at university I'm scared to go to the hospital because they don't know me and have all of my notes, it is tough because when you go in you get asked a lot of the same questions which can be hard when you're in pain but if you don't speak you won't get help, I also think there needs to be more training about sickle cell as some people in the medical field aren't educated about it enough

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I absolutely agree but sadly if you need medical attention you have no choice but to repeat or even educate the medical staff dealing with you. I think maybe a system could be set up where we as SCD patients have all our medical information on a card which any medical team can access so we don't have to repeat ourselves. In the meantime please try and give as much info as you can when you need medical attention during your time at university, to speed up the process. Maybe you could ask your GP who knows your situation to write a letter with all your medical information and medications etc so you can submit that to the medical team at University. Make sure you have all your meds with you when you start university and join a GP practice asap so your notes can be sent over. I wish you well. Take care.

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A card would be a good idea

I see my haematologist more and my university already know I'm registered with the gp I always have my medication on me I don't like to take risks the thing is medical staff can read your notes but they will still ask you questions anyway

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I am an outpatient to one of the leading hospitals in the U.K. where I see my Haematologist consultant routinely. I have access to the best care possible. My GP understands issues related to Sickle cell and responds to my healthcare needs promptly. So sickle cell has not hindered my access to healthcare. If my crisis gets a bit critical I know where to go. Knowing where to go to seek healthcare is however very critical to every sickle cell patient.

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I absolutely agree that knowledge is key to helping us with our diesease. I wish you well.

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It has not hindered my ability to access healthcare, having SC you have to be proactive before you end up in all sorts of problems.

It is rather healthcare professionals who have a poor understanding of the condition and its symptoms. Healthcare professionals either disregard our symptoms or disbelieve us. We could say something, or our physical appearance could appear different with healthcare professional solely depending on blood results. They don't look at the experience, that every individual is different so don't provide a holistic personalised care.

I was recently admitted in hospital for 2 months and the care was disastrous and horrible. For such a vulnerable group with the ward 'being' a sickle cell ward. The Drs were good but the nursing care was shocking although the nurses were supposed to be knowledgeable and experienced in dealing with such a client group. Even basic nursing was non-existent, the only time you see a nurse was during medication rounds and their whole focus was just giving whatever you have been prescribed without any dialogue or collaborative care. The ward was devoid of any compassion and on several occasions heard nurses even senior ones referring to morphine as juice. The focus is so much on medication that I was not surprised some people were always in and out of the ward like a revolving door. Since that experience I have vowed never to be admitted on that ward even if I am dying - that is how bad it is.

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I also have a love hate relationship with the healthcare system. It's almost always a struggle when it comes to dealing with doctors and nurses. Especially when I am admitted in an emergency situation, it's difficult to get them to understand my situation, the medicine I need to get better that sort of thing. But through the years I have developed a better relationship with the Doctors, but you have to be open and firm, and professional. I wrote a letter to my doctors to change my treatment.

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Great idea. We have to find ways that will make our condition easier to manage. Well done and take care.

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There's a Sickle Cell Anemia Clinic where I live. Sickle Cell Patient's have 24 hrs. access to their nurses/Dr. that's on call. You can call and ask the nurse/Dr what should you do. If you have a sickness like the stomach virus/fever. They would ask "Do you fell like you need to come in for treatment?" If yes,then you would go to the clinic get IV fluids and pain medicine. If that doesn't work they would admit you. The clinic is open 8am-5pm after hours there's an area in the hospital where treatment is administrated.I like the fact you don't have to go through the ER, the nurse/ Dr knows you by name, and when you call late they'll call you right back without an attitude and with respect.I was so great full when someone thought about doing this for Sickle Cell Patient's in our community. Best thing ever!!!

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Hi ODH1, Where do You live, what area has this type of care so readily available to SDC patients. This is absolutely wonderful the older I'm blessed to be the more problems I'm having and have been doing a modest search for areas with great care for SCD patients my relatives say Georgia and Texas are good areas for SCD patients. Yes, realize your post was written some time ago but, I was searching the"Health Unlocked" site for information and I saw your post. Thank You, Living Life.

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My grandson was diagnosed on birth. Healthcare has always been available whether State provided or job provided. My daughter now is self employed and we have been blessed with no serious hospital visits required for the past 2 years. We will see when we need to use the healthcare.gov program

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Taking under consideration that I was diagnosed at age 10 in 1966 and I had a team of seven physicians who worked feverishly to find out what my issue was and when they did they went right to work on me to get my pain under control and inform my parents of how I had become ill and the reasoning behind it. At that time I had the absolute best doctors and nurses. Then when I was an adult married woman and my husband was cross training jobs in the Air Force and we were expecting our first child he moved me home to my parents as he was going to Texas in the heat which my doctor didn't recommend for me. My mother prepared a delicious meal and I had one scoop of what they then called ice milk(just like vanilla ice cream) with a teaspoon of strawberry freezer jam) had one bite and immediately felt uncomfortable. Excused myself went to lay down that was uncomfortable. Got up my mother took one look and suggested I get in my fathers easy chair and he pushed it back I couldn't breathe. My father picked me up put me in his car got my mother too she rode with me in the back seat. As I was lying on a gurney I could see my parents speaking with my doctor who just happened to be on call I said to a nurse who was passing by (gasping for breath) I can't breathe her reply to me was...."You'll be Alright" she didn't call the doctor or anything I had to push the Burney I was lying on to get my doctor and parents attention they came running. Thank God they did I had numerous blood clots in both lungs and she wouldn't help!! To this year 2018, my primary care doctor sent me to the hospital "ED" for a specific test and after many hours of waiting patiently and finally meet the doctor assigned he says to me humpf "I don't know what makes your doctor think you need this test and I'm NOT DOING IT" He walked out and his nurse was just as bad well over 40 years elapsed and still such fools that we have to suffer for our services. Why do they feel they can treat us with such disrespect and we're kind and speak with respect and in return we get treated like scrounging drug heads, tweeters, something to wipe off the bottom of your shoe like dog mess. We don't like taking meds but being treated like back alley drug seekers is wrong. Sorry CalvinHU I forgot to greet You at the beginning. Hello Valvi HU hope this helps you. Living Life

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It has been almost as traumatic as the disease itself. It is psychological warfare interacting with the health care system.

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Sickle Cell disease is one of the oldest, if not the oldest genetic disease known to man in this part of the world. Yet, this disease was also the least general understanding of the symptoms for many years; because the earlier work on SCD was thought to be a black man disease; therefore SCD was ignored. It was recently that SCD was revisited, because of its devastating complicating nature, and it spread in other population outside the Black population all over the world. My SCD have hindered my ability in achieving my goals in life.Some day, I hope I will be able to pen down in print, my journey with SCD.

#DrAnGuoba. #@DrAnGuoba.

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I am sending this for my son. He has been in so much pain in emergency room that he is screeming uncontrollable, because of the severe pain. He is very jaundice at that time, and running a high temperature. No one enters his room, until I went out an announced my RN status, and told them that this was an emergency. My son is in need of IV fluid, 02, and pain medicine. When they told me they had to wait for the docto, I said that is a lot of crap you can not start an IV. They immediately came into his cubital folled by a nurse practitioner, and he began to receive treatment.

When he has a nurse that understands Sickle Cell, he received treatment. This has occured in several hospitals. The medical and nursing board says they have informed staff, but many do not take the message as an emergency situation.

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