Saturday, 10 May 2008

Calum Carr's battle with the NHS for treatment for his wife

Ellee asked in a reply to an earlier post if we had taken up the issue with our MP. My reply to her was so lengthy that I decided to make it into a complete post.

We have involved our MSP since health is devolved to the Scottish Parliament.

An abbreviated timeline is shown below but fuller details can be seen here.


"On 5th July 2007 our MSP wrote a detailed letter to the Chief Executive of NHS Lothian.

On 19th August 2007 NHS Lothian replied but did not address any of the questions / major points raised but rather questioned some of the background information included by our MSP.

On 21st September 2007, our MSP wrote again.

On 21st November 2007, our MSP wrote once more chasing a reply.

During January 2008 our MSP's office phoned repeatedly but in their words, "We were given the run around."

On the 25th January 2008, NHS Lothian told the MSP's office that they would have a letter issued by early the next week."

On 25th March a reply - again unsatisfactory - was received.


We waited more than 6 MONTHS for a reply to our MSP's second letter.

We waited more than 8 MONTHS for answers to the issues raised in the MSP's first letter and have not yet received them.

There is no doubt in my mind that NHS Lothian has deliberately delayed its response and deliberately refused to answer the key questions but this begs the question, "Why on earth should they behave in this way?"

The only explanation which makes sense to me is that NHS Lothian believes that many (or all) of Mrs Carr's symptoms are escalating behaviours to get further treatment. A common method of dealing with such patients is to ignore them on the basis that to give credence to the symptoms only encourages the person to make more demands. This would explain why no-one has offered us an explanation either for her symptoms or her lack of treatment.

There is more evidence for the view that Mrs Carr's symptoms are not taken seriously. I found, on the web, that the NHS uses a particular self-reporting questionnaire for assessing depression levels in patients (PHQ-9). Twice Mrs Carr completed this form at home: once I gave a completed copy to Mrs Carr's GP and once to a hospital psychiatrist after a suicide attempt. Mrs Carr scored 23 and 25 (out of 27) respectively which is indicative of severe depression. On neither occasion was any interest shown in the results nor was any action taken. Interestingly, a few months later when I visited the same GP because I felt really down she gave me the PHQ-9 form to complete. Therefore, the form was worthy for me to complete but irrelevant for Mrs Carr's treatment despite the very high scores.

If the NHS believes Mrs Carr is escalating her behaviours, then she is still very ill and deserves to know her diagnosis and prognosis and to have treatment.

If the NHS is wrong, as I believe them to be, then Mrs Carr desperately needs the correct diagnosis and treatment but ....... since they won't talk to us we cannot accept nor reject their views and cannot get get a referral to an appropriate assessment and treatment centre.

I have spoken to 5 national treatment centres and all have said that Mrs Carr is the type of patient they should see but we can't access them. On the basis of two self-reporting questionnaires one centre said that Mrs Carr scored highly for the relevant disorders and should have a full assessment. This has been denied to Mrs Carr by NHS Lothian.

I should make clear that I am not taking the line that Mrs Carr has Disorder Z and that I won't rest until she is diagnosed with it. Her history and symptoms fit with Disorder Z; national experts believe she should be assessed for this disorder but NHS Lothian remains silent on their diagnosis and reasons. Until NHS Lothian is open and honest with us I will not rest. This is all I ever wanted; openness, honesty, trust in clinicians so that Mrs Carr has an opportunity to improve. What we have encountered is coldness, closedness, callousness, obfuscation, delay and a refusal to engage in any serious discussion of Mrs Carr's problems.

The minimum NHS Lothian should do is tell us the truth. Then we can either accept their version or fight it but by refusing to engage with us (or our MSP) they leave us struggling in a vacuum. How can we accept a diagnosis if no-one tells us what is the diagnosis? How do we challenge a diagnosis if no-one tells us what is the diagnosis. How do we fight for assessment if no-one tells us why they won't make a referral?

Even worse by not engaging with us Mrs Carr has been left ill and, apparently, unwanted, for an additional year with no likelihood of effective assessment or treatment and the rest of the family has been left with the stress of caring for Mrs Carr and of seeing her continue to suffer unnecessarily.

Also the trust which Mrs Carr should have in the NHS has been destroyed. How can she be expected to trust clinicians in the future when she has been treated so badly?

Let me say again, all I ever wanted was openness, honesty, truth and trust in clinicians so that Mrs Carr has an opportunity to improve but what we have encountered is coldness, closedness, callousness, obfuscation, delay and a refusal to engage in any serious discussion of Mrs Carr's problems.

The system has closed ranks against us.

The system is killing Mrs Carr.

Fight: I have no option.

Please help me.

Please help Mrs Carr.

Together we have a chance to force NHS Lothian to speak to us honestly and to view Mrs Carr as being ill and worthy of urgent treatment.

Calum's blog is here