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    • #11643
      Brittany Foster
      Keymaster

      Let’s face it. Sometimes, when going to the hospital, not every single doctor in the emergency room will know about pulmonary hypertension. I have had some not so great experiences and some good experiences. When I was given fluids in the hospital one time, it wasn’t until the next day that I realized I was given too much and had painful fluid retention. I decided I needed to advocate for myself better. I know my body best.

      One of the things that I have been working on with the help of a therapist and my support systems is advocating for myself as a patient and making my needs known.

      It can be intimidating to educate a medical professional about your condition, but it makes a world of difference when it’s someone who is willing to learn from you. I like to bring important medical documents as “proof” of my condition. I also find it helpful to bring handouts or diagrams of how my chronic conditions effect my body including my anatomically different heart.

      What are some ways that you advocate for yourself to make sure you get the proper care? Have you found it difficult in the past to have conversations with doctors about your needs? Has there been a time where you didn’t feel listened to or taken seriously ? Self advocacy is so important!

    • #12110
      Julie Shrive
      Participant

      Am in Stroud Gloucestershire UK, hospitalised by ambulance on Monday called out by 111 & GPs not wanting to set up Rapid Access .First responders? Who found to heart left bundle block as I thought angina symptoms worsening as in morning too .

      GPs yet again have been ignoring Planning & NHS Constitution yet trying to leave me housebound with no assistance by saying no driving even when the Duty Dr knows housebound as no carer or set up .

      At the A&E I was neglected from 10.30am – 12 pm when only a youth/student appeared to be there in another area referring to someonelse on a phone or Computer.When typed his name into Computer oh dear ??!

      I had been held in side ward/unit with window open area with others of a certain age most with Carers one had a MI & resus in front of me whilst waiting . This was against my will they even refused to transport me back calling the not fit for purpose hospital daytime transport[ now nighttime] that takes another 6 hrs to get there .They said no longer did one man taxi this was untrue as eventually had one told had to pay for in a state of undress.

      Tuesday spent trying to access Advocacy agreed to wanted only to do the Complaints Procedure which is unfair hearing .This has been going on since 1996
      .
      Wednesday the Car needed MOT & service as WAV vehicle ^ without housebound .Do I listen to the Duty dr who had deliberately not familiarised with my case only incorrect record as hospital said ok.when know regular CPAP machine has no effect & ignore PAH failed to diagnose or investigate fairly by no testing when Brompton Hospital asked for re stent trial .I already have heart one – angioplasty.

      Thursday- Just been trying to take up issues I had this Monday re :GPs as today had to get another appt at another surgery who will not do anything of note may get needed antibiotics & testing which surgery refused for 4 weeks .

      The GP did call today when out getting oxygen – self funded & reflexology & physio….Not there when phoned back & 11 refused to address concerns ambulance service Manager not there either ???!!

      I am still trying to set up Planning & Rapid Access as single solo classed as Vulnerable with the GPs ignoring the direction from Specialist PAH in London as the one here said would investigate the Microvascular with London but could not arrange the Integrated Services as suspect system not fit for purpose as no specialist in charge as directed by Insurance Companies.This is the same re Lipo- Lymphoedema run by McMillan Nurse in a hospice giving out cream & compression garments with no contact with diagnostic specialists.
      This is because PAH only showed up on insertion of Reveal device which am not sure is operating as no-one feeding back reviewing communicating even when I call the Dr in London should be as suspect sampling.Only then did I get diuretics knowing oedema had flared up for 2 yrs .
      My classic heart failure symptoms now confirmed last year with Afib & rivoroxaban appearing in my Dosset box no discussion about essential monitoring & emergency procedures ? This has further caused disabling conditions affecting function & mobility as well as lipo-lymphoedema 2 made worse by deliberate neglect of underlying disability spina bifida , abnormal EEG hormonal imbalances & cellulitis from birth [ one of the first on penicillin] as neglected because of ethos policy & procedures in administration of NHS & corruption because of Funding assessment .

      I have had to change surgery over & over again as my safety is put at risk as make economic Cuts via stopping hospital appts & medication as not targeted antibiotics which have caused kidneys to be scarred from childhood as only found out in my 20s can’t catheterise & weakness in female area that is genetic a long with mo/ & fact can’t be examined & need sedation .
      These conditions flare up when antibiotics not neglected as appts with Prof in London for 30 plus years not transferred when moved 5 yrs ago .However even he was not allowed to address the spinal spasticity spasms & consciousness ones like TIAs on ingestion daily.As THIS new surgery like the others before the GPs p/t seeing you for only 10-20min often my slots are following up what say going to Fast Track & deception appears to be happening by I suspect a Group Meeting with other Drs who refuse to assist when p.t not there yet can tell you banning driving when no assistance set up & problem ignored since before MI.
      When Ambulance asked about Planning & Bundle block knowing been trying to have corrected the omissions & incorrect facts in the online record re: apnea & Lung Function run by no Dr diagnosing or testing appropriately since before moving as Independent Review put in for at Royal Courts of Justice to be not granted by admin deliberately losing the paperwork over 20 yrs ago as do not address mitigating circumstances??!!!.

      Fortunately contacted the Brompton cardio-pulmonary hospital of distinction .I come from a Family of pharmacists & teachers & probably why still alive as take may life into my hands when urgent & necessary if no fair collaboration just bad behaviour that must be fatal .

      • #12116
        Kathleen Sheffer
        Participant

        It sounds like you are dealing with a lot of frustrating factors, Julie. How can we help? Do you have any caregivers with you?

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