#NHS DVT/PE Health, Wellness, and Cure Initiative

I'm still here- general thoughts and research at the moment 

1. Patient exit interview and discharge letter...

Nothing to get anxious about, just plan for the worst and hope for the best in medicine therapy economically.

2. What happens to discharged PE patients with elevated adrenaline/cortisol levels, altered states of conciousness and integration back to normality with a new born child, twins or anything else...

Below is an exerpt from The European Respiratory Journal

A total of 675 patients were diagnosed with pulmonary embolism during the study period. Of the 675 patients, 225 (33%) died before they could be questioned. Also, 139 patients of the remaining 450 (31%) did not give informed consent for the follow-up visit because of comorbidity, geographic reasons, impossibility to give informed consent due to psychiatric disease or aged <18 yrs or other reasons. the 311 study patients were interviewed 3.7±1.88 yrs (maximum range 1.1–6.3 yrs) after the diagnosis. in total, 190 (61%, 95% confidence interval (ci) 55–67) patients confirmed a smoking history (active or former) at the time of pulmonary embolism, of whom 94 (30%, 95% ci 25–36) patients were actively smoking. out of these 94 patients, 32 (35%, 95% ci 25–45) had successfully quit smoking in the first year following the diagnosis. overall, only two (0.64%, 95% ci 0.08–2.3) patients started smoking after the diagnosis of pulmonary embolism. the percentage of quitters was not associated with age in the pulmonary embolism cohort. yrs="" or="" other="" reasons.="" the="" 311="" study="" patients="" were interviewed="" 3.7±1.88="" yrs="" (maximum="" range="" 1.1–6.3="" yrs)="" after="" the="" diagnosis.="" in="" total,="" 190="" (61%,="" 95%="" confidence="" interval="" (ci)="" 55–67)="" patients="" confirmed="" a="" smoking="" history="" (active="" or="" former)="" at="" the="" time="" of="" pulmonary="" embolism,="" of="" whom="" 94="" (30%,="" 95%="" ci="" 25–36)="" patients="" were="" actively="" smoking.="" out="" of="" these="" 94="" patients,="" 32="" (35%,="" 95%="" ci="" 25–45)="" had="" successfully="" quit="" smoking="" in="" the="" first="" year="" following="" the="" diagnosis.="" overall,="" only="" two="" (0.64%,="" 95%="" ci="" 0.08–2.3)="" patients="" started="" smoking="" after="" the="" diagnosis="" of="" pulmonary="" embolism.="" the="" percentage="" of="" quitters="" was="" not="" associated="" with="" age="" in="" the="" pulmonary="" embolism="">

Hi 

since I first posted the info about my son and the terrible treatment he received and how he nearly died we have since put in a complaint received their weak response, which I stripped to pieces with a lot of research knowledge, we then have had a meeting and yesterday their response. They will be instigation many changes incorporating nice guidelines, ensuring improvement in records and communication, 

does that help everyone in similar situations, yes put your complaint in, failure to follow policy and guidelines. 

Now, the nhs needs to make this nationwide. 

As for the post treatment they have made assurances however, no admission to the fact my son's quality of life is v reduced .

these awful numbers need to be made transparent.

gillian81509,

i think putting a complaint in, is a futile exercise.

If we are in a position to complain, maybe we can be in a position to resolve the complaints and prevent further instances for continuation of these cases.

It could be argued NHS staff are overworked, underpaid, and under appreciated. Increasing their workload + responsibility to target reducing PE related readmissions and premature deaths will be hard implement imo. How can top down motivate and inspire within the NHS - a culture of time, costs.

It is simply day's work for ground level up - doctors, nurses and support workers. Big burden all round and lives are being impacted and lost frequently.

The NHS will not divulge anything unless procedures are followed, by putting in a complaint I had access to all the notes and could then argue they were in breach of policies etc. and were culpable including research the European respiratory journals, I was able to quote statistics to them, use evidence based research, their failure within their own professional bodies standards.

So much so they have now agreed to implement these changes; what I want is for this to go nationwide and that some compensation for previously incorrectly diagnosed. 

I want the NHS to realise that after the diagnosis, life changes and PE and associated problems cardiovascular, thrombolytic, respiratory can’t just be dumped on the refuse pile, and a long term care plan incorporating the required treatment benefits is needed. This is known as the biopsychosocial model, that all three parts of the patients are considered, the biology (illness condition) the psychological side (how it affect you mentally) and the social (how you are managing with life, work, living, and mobility – what do you need)

We are in discussion about negligence with legalese so I can’t say any more but I now know my son has a considerably reduced life span.

I don’t want this to continue for others and therefore we need to act as a whole but you need to prove fault before you say, ‘I want action’.

You need to be to prove that they didn’t do their best, that procedures weren’t followed etc.

To do this follow the yellow brick road and complain.

​

" I now know my son has a considerably reduced life span"

gillian81509 - I think your statement is based on your research which probably you have defined as fact.

My exit interview was a lengthy talk with the hospital chaplin. Remember, the DVT/PE patient is susceptible to anxiety and adrenaline/cortisol imbalance...resulting in short term memory loss..... 

The hospital pharmacist gave me an extra large A3 sized (approx) button bag and about 40 days medication. I must remember to take medicine, otherwise I would be readmitted to hospital or die.

The following 2 weeks at home was particularly distressing- I collapsed on a regular basis (less than ten times, more than five) walking to and from bathroom to bedroom (approx 5 meters). Or simply talking, having a shower, being at home and looking after my daughter...

I feel a lot better now. 

 I don't want to say any more on a public forum.

Hi

I'm not trying to sound too factual but as an x ahp I'm aware that certain changes in my sons physical state will have caused possible increased reduction in his enjoyment and fulfillment of a full and healthy life.

physically restrictive with full length compression hosiery, reduced air inhalation, chest pain with damage done to heart by his numerous blood clots (he had>22 now has resulted in developing atrial fibrillation .fatigue anxiety short term memory etc .

he came gone to me for 8 weeks spent first 4 weeks exhausted 

I commend you for managing a baby well done 

I'm seeing my mp to ask the health minister IF these changes are going to be implemented then why the *@*@!*@*@ weren't they there anyway. 

How many of you wouldn't be in this predicament if diagnosis had been immediatly!

6 MONTHS my son said how ill he was, their final response was to his manager, "X Is trying to get out of work his lifestyle needs changing, suggest you proceed with a disciplinary for failure to manage health and thereby affecting work" 14 June 2014 , 19th June emergency admission a/e, HDU phone mother could you come immediately, your son is very ill.once again well done are you a bit better now?

...So much so they have now agreed to implement these changes; what I want is for this to go nationwide and that some compensation for previously incorrectly diagnosed...

Positive changes should go nationwide. Seeking compensation is a retaliative/combative/blame culture route and best use of resources. There is justice and personal triumph to be gained, but i summise the energy to compensate other cases and set viral precedence may be diluted by 'own personal triumph'- look after no.1.

I do not think it is logical to administer 'Justice' in misdiagnosis of health conditions - The Question of 'choice an compentancy' will be addressed for 'treatment' of illnesses without a cure.

I think DVT/PE health care develops with first hand experience of health conditions and ongoing biopsychosocial research.

Have you ever wondered why some animals do not do too well in captivity?...

gillian81509

as a result of your sons condition,

have you asked everything what your son wants to be done.

the 'blame game' may 'do your sons head in'. Speaking frankly, i believe a MPS only concern is popularity. I'm not sure what a health minister thinks - but Im sure it will come down to

1. money

2. performance of the NHS- less deaths on their watch.

3. number of people reliant on welfare state due to sickness and disability, employment support and so on etc...

You and your son have been through the mill and its not a nice place to be. I don't know whats next for me, may be I can find some answers here. I wish your son well. 

Hi 

very good and I do concur, for my son I'd like some recognition that every department failed him, they have at least recognised this.

I don't want another relative friend person to go through misdiagnosis and become another statistic either will long term conditions or sadly worse .

all the measures are in nice guidelines but as discussed by ostler in his critique of the bsm it can result in professionals working "off piste" resulting "all the ingrediants but no cake".

There are so many heartbreaking stories on this forum the pulmonary embolism clubs are bursting to capacity .

let's make this more a focal point to ensure better diagnosis care and recognition of post pe conditions.

As I have said this is not about my son per se, but to make these changes nationwide the health minister has to be made aware 

I want this for everyone 

thank you