Sorry, this is a long one….
(December 2012 update: this report was eventually declared not fit for purpose)
During the (recorded) assessment there were a few procedural problems:-
During the assessment, the HCP’s line of questioning at times was wholly inappropriate. At one point he clearly said “If I tick ‘no’ to this whole section they (will?) probably give you a 24 hour carer, is that what you want, is it?”. This has no place whatsoever in any medical assessment – it is not the doctor’s place to suggest outcomes but to report his findings. Considering that the HCP was a well built male doctor and was ‘assessing’ a vulnerable patient, whom he knows has a condition where one of the main triggers is even a minimal amount of stress, and one whom he knows has a mental health condition, he should have realised before causing his client to break down in tears and me stopping the assessment how inappropriate he was being – all she was doing was trying to answer the questions honestly and the doctor was clearly coercing her not to do so by pointing out the outcomes of such answers
The HCP asked a question about my partner getting out of bed by herself without difficulty. Her answer was “yes sometimes when I feel better however much of the time…”. The doctor then asked the next question and had merely ticked ‘yes’ on his form. I stopped the assessment and pointed out to the doctor what this was extremely inappropriate. He claimed that the DWP only allow him to tick yes or no in this section. This was clearly untruthful as the report is annotated in these sections.
The HCP harangued my partner by asking the same question 4 times. As before my partner was being honest throughout and trying to be as composed as possible which was very difficult for her given the falsehoods previously contained as a result of ATOS assessments. The question was about her ‘turning in bed’. My partner stated clearly that once in bed, she did not turn onto her side as this usually causes further discomfort and incontinence. Bizarrely the HCP then asked her to answer this question “hypothetically” which is not only very strange, but also extraordinarily insensitive to someone who life is blighted by defecating herself.
The rest of this post is about the inaccuracies in the report itself:-
- Infliximab is incorrectly spelt and there is no ‘reason for use’ listed.
- There is no record whatsoever of the daily Pentasa enema which was shown to the HCP and handled by him. (This is mentioned in page 6 and so it is obvious that this was a part of the assessment)
- There is no record whatsoever of the oral Pentasa granules which were shown to the HCP and handled by him.
- There is no record of the Colifoam steroid enema which was discussed with the HCP (but this is mentioned on the previous page in a different section!).
- There is also no record whatsoever of the stated regular infusions of IV steroids.
- There is also no record whatsoever of the stated regular infusions of IV fluids.
- There is no record whatsoever of the stated occasional infusions of IV iron.
Side Effects of the Medication
This section is remarkably empty compared to the actual assessment recording.
- The major side effect of the medication is the dangerous lowering of blood counts and liver function (mainly from aziothiaprine). This means that medication levels have to be constantly changed. This means enhanced fluctuation in Ulcerative Colitis and therefore differing care needs.
- Aziothiaprine is an immunosuppressant which means that other illnesses are readily caught.
- The major side effects of steroids are bloating, dizziness, fatigue.
- The side effects from codeine are a loss of focus and memory problems.
- The side effects from Infliximab and steroid infusions (which last around 5 hours) are that recovery takes around 24-36 hours afterwards.
- The side effects of the daily Pentasa enema is that movement is not possible for 2-3 hours after administration (as movement triggers it’s release)
- The uncontrollable shivering, loss of movement ability and coldness following incontinence (in particular when my partner tries not to be incontinent (eg when she cannot make it to a toilet readily) is currently being queried by her consultant as a possible conflict between 2 drugs although she has also had an MRI scan for this (results not yet available) – even though this is not definitely a side effect yet, I feel that this should have been included as a suggested possibility.
These were all stated at the assessment but incredibly not in the report.
Relevance of side Effects of the Medication to the disabling conditions
This question was not asked at the assessment and as it is not filled in I presume that the doctor does not feel that there are any.
I dispute this very strongly in the following ways:-
- The changes in aziophiaprine dosages owing to dangerous cell counts and liver damage make it very difficult for my partner to keep a track of her daily medication.
- The immunosuppressant effect of aziothiaprine make extra demands on care giving – For example shingles, gastroenteritis, multiple colds, regular flareups of eczema, ulcers and so on.
- The codeine has a clear effect on daily functioning from getting up, performing routine tasks, taking care of affairs, mobility.
- The steroid infusions cause bloating and general ‘fuzziness’ which affect mobility and cause fatigue.
- The enemas require application by a third party and care during subsequent hours when Ms Newton is required not to move.
- She also needs help to attend regular infusions of medication at the hospital (Infliximab, iron, IV Steroids, IV fluids) particularly as these are long and gruelling sessions and she needs a lot of recovery time afterwards.
- Whilst this point is unproven, it was stated as such at the assessment and should be stated as such in the report. My partner’s consultant believes that the uncontrollable shivering, coldness and often results in loss of full limb function after many bouts of incontinence may be due to some of her medication reacting badly with another and is currently testing this (in addition to sending her for an MRI scan). This of course is directly relevant to both care and mobility components of DLA and should have been included in the report.
- The general loss of balance, fuzziness, and lack of coordination obviously require care to be given: for example in preparing meals, when outdoors and so on.
- She stated her need for regular tests, mainly blood, bone and liver to monitor the side effects that her medication is having on her. This is directly relevant to her claim for Disability Living Allowance as:- she usually needs help getting to these appointments. The resultant changes in her medication are difficult for her to keep track of. The resultant changes in her medication lead to wild fluctuations in her condition (eg the reduction of Aziothiaprine because of dangerously low white blood cell counts immediately worsens her ulcerative colitis). There is no mention of this whatsoever yet obviously an important part of her condition caused by the side effects of her medication.
Additionally on page 6, the doctor mentions:-
- Care required following enemas
- “dizziness from medication and losing her balance”
- “Losing focus in her left eye following medications” (I have not mentioned this above as this has only happened once which required a specialist appointment with a Moorfield eye hospital consultant)
Surely this indicates other side effects being mentioned during the assessment?
It was clearly stated that she has NOT had pyschotherapy, she was advised at assessments for her mental health that psychotherapy was advised but that she was considered to be too physically unwell and that psychotherapy may well exacerbate her physical condition and has been instead referred to a specialist mental health worker who deals with IBD.
How often does the customer report they need help to use the toilet at night
“at least 3” was very clearly stated but yet “3” is written on the report
My partner very clearly said that she would rather not perform some activities (such as this one) as it is caused her abdominal pain to worsen and often triggers incontinence but that she would if the HCP still wished. To which the HCP replied “No, No, that is ok” – This, in no way whatsoever, can be termed a refusal.
This is clearly not a refusal to carry out these tasks and we resent the statement that an instruction was refused as at all times, my partner tried to comply with the assessor.
I have no idea what ‘look after herself’ means, but my partner does not take care of herself at all, nor can handle her affairs due to her mental health problems.
The comment about my partner being ‘well nourished’ is quite insulting. She has been admitted to hospital due to malnourishment and at the moment lives on a diet of very poor food as her body cannot digest most healthy foods and vitamins. She is also bloated because of steroids. This is hardly ‘well nourished’
“By day:-“ – Here there is no mention at all of the uncontrollable shivering, loss of movement ability and coldness following incontinence when my partner tries to hold back her incontinence.
There is no mention of the intense fatigue and mental health issues which sometimes affect her cleaning herself and surroundings.
“By Night:-“ there is no entry here despite this being mentioned in detail earlier in the report.
(To make it clear, she in the night as she is extremely tired and disorientated due to her fatigue from the day and her lack of sleep from having to get up so much and often needs help in getting to the toilet and in cleaning herself and sheets, her limb ability has no bearing whatsoever on this).
I fail to understand that despite being informed of this, the doctor has not included:-
- intense fatigue (UC, (occasional) anaemia, lack of sleep)
- Coordination (codeine, lack of sleep)
- The uncontrollable shivering, loss of movement ability and coldness following incontinence obviously affects care immediately afterwards ( ie cleaning and getting her to a place of safety / rest)
- Mental health issues which mean she rarely has the confidence to do anything even slightly unfamiliar by herself.
There are other minor errors in the report but it is incredible how inaccurate a reflection this report was to the actual assessment.