Summary Care Records - Tattoo Needed?

I have an allergy – a significant one, potentially life threatening, to a drug used commonly in general anesthesia.  This was discovered during surgery as a child.  At the time I was given a small card with the name of the drug.  I don’t know where the card is now.

Fortunately I can remember the name of the drug.  Being a doctor helps.  I could tell anaesthetists about the allergy before operations, and hopefully give them enough time to find a suitable alternative.

That, of course, relies on me being in a fit state to do so.  I’d need to be conscious, need to be thinking straight, need to have a good memory.  The drug has a long name, is hard to spell and relying on family members to recall it in a stressful situation is unrealistic. 

So what are my options?  I could wear (all the time) a bracelet/necklace with the information on.  I’ve looked at the designs available and although I realise their importance I’ve always delayed ordering one.  I rarely wear a watch, and am a reluctant jewellery wearer.  I am wrong, but suspect I am not alone.  I could carry a card in my wallet, but I’m not convinced anyone would search my belongings before surgery.  Please tell me if I am wrong.

My hope, as a potential patient, is that any medication and allergies would be available to the hospital team, in real time.  I have the same concerns as many about the importance of privacy and confidentiality.  But, if we have the ability to improve safety, particularly with prescribing, we should have a duty to share.  Prescribing errors are known to be a significant issue, causing patient harm and longer hospital stays.  Yet they can be reduced.  The ability to share a Summary Care Record is here, and yet we do not yet have a culture where sharing is routine, where clinical teams routinely look for information before making treatment decisions.

An elderly patient, with an acute illness such as sepsis or a longstanding condition such as dementia, will often not be able to share medical details and allergies.  We should not be in a position where even a simple decision such as which painkiller to prescribe is made without a knowledge of potentially life-threatening allergies.  I wouldn’t want to prescribe in that situation, and wouldn’t want to have surgery without the doctor being able to access my Summary Care Record 24 hours a day. 

We are not at the point yet when I have confidence that would happen.  I'm not even sure what my own surgery's position is.  What would my anaesthetist want? 

Perhaps I ought to reconsider a tattoo….

What He Doesn't Know

She is 85, frightened and confused in her increasingly rare lucid moments.  Her husband struggles to care for her, his days a constant battle of negotiating, reminding, coercing.  They both have an overwhelming sense of frustration.  And guilt.

Their daughter has done well, with a successful career, a family and a large house.  150 miles away.  They've thought of moving but they have always lived in this village, and neither can face a new environment.

The carer comes twice a day, mainly to help with bathing and dressing.  The visits are short, but most days this is the only conversation he can look forward to. Lately the carers change more.  They seem to be quicker, often talking about where they need to be next.  They come at 9am, when his wife is often asleep after her increasingly disturbed nights.  They've been told they can ask for their needs to be reassessed, but they seem so busy and he doesn't like to trouble anyone.

The district nurse used to visit when he had a leg ulcer.  3 times a week.  They asked a lot of questions, seemed genuinely interested in his nutrition and mobility. His wife wasn't 'on their books' but she enjoyed their visits.  His leg ulcer healed 3 months ago, and he 'isn't housebound' so he's been 'discharged.' He is mobile but wishes he could leave the house, but she gets distressed whenever he leaves.  Tesco delivers their shopping now.  The chemist delivers their medication.

The last time he saw his GP was when his wife had her dementia review.  Her blood pressure was fine, she had normal blood tests and showed no signs of depression.  There seemed to be a fixed set of questions to run through.  He had asked about carers and the GP had requested a social care assessment. That was when the carers started coming.  Things were worse now, and he felt less well himself but he'd probably wait and bring it up at the next review.  He wasn't sure when that would be.  He had received a letter offering a flu jab appointment.  He might ask then if he was able to get someone to look after his wife.

Anyway, if there was anything else anyone could do they'd probably have done it.  The carer would have mentioned it, wouldn't they?  Or the district nurse might have expressed her concerns to the GP.  The GP might have called in on his 'rounds'.  Dr Robins would have done, but he retired 10 years ago and he's not sure who the new GPs are now.  When his wife had a water infection recently they'd sorted a prescription over the phone.  There is a practice leaflet but so much seems to be on a practice website nowadays.  Not really much use without a computer.

What he doesn't know is that the carer doesn't know who his GP is either, or which
 practice he is registered with. The district nurse doesn't have access to his full GP record, and hasn't had a face to face conversation about anyone with his GP for 8 months.  The district nurses moved out of the practice into a new 'hub' then, and their new contract means they have a limited number of visits and only to those who are medically housebound.  They aren't on the GP 'radar' because their medications aren't up for review yet, and their QOF reviews aren't due for 4 months.

He's married yet lonely.  They have carers yet aren't truly cared for.  And their story will be familiar to many.

This blog was written to raise awareness and to reflect discussions in the CCG members' meeting where GPs discussed the importance of the primary care team, communication and the lack of engagement with community teams.  This is a key challenge to the CCG and emphasises the importance of the members and the role of the practice/practice team.

Dementia - Beyond Planning

We have just submitted our draft commissioning plans for 13/14. Pages of trajectories, targets, pledges and aspirations. The team have put a huge amount of effort into the document, translated guidance and the new system, and we are now currently consulting with partners and patients.

One of our local and national priorities will be dementia. We have a national target to increase the number of patients diagnosed with dementia, as have all CCGs. Putting the issue of screening aside, is early diagnosis a good thing? Does it matter if treatments aren't effective for all, if a delay in progression is likely to be the best outcome? We are also aiming to reduce antipsychotic prescribing in patients with dementia. It's important to look behind the targets, to talk to patients, to see if what we are doing is likely to make a difference.

So I recently met a group of carers, all with relatives with dementia. They were an inspirational group of people, and it was one of my highlights as a CCG Chair to spend some time with them, realising how they provided mutual support for each other. It was also clear that they shared their frustrations, their anger with the condition and with the care system. There were plenty of tears during the meeting. This was the reason behind the plans.

Clear themes emerged from the discussion.

Diagnosis

All used a common word to describe the process of diagnosis. It was a 'battle'. In some cases it took years. The younger the patient, the harder it seemed. Stories were relayed of stressful trips to tertiary centres, to see specialist neurologists, only to be told their loved one's memory was not as good as it used to be. 'I'd told them that, I'd known him for years.' Nearly all had been diagnosed with depression first. 'If he was depressed, it was because he knew what was happening. No one took into account his family history of dementia.'

All agreed that early diagnosis would have been beneficial. But it wasn't just about treatment. It was clear that they valued the mutual support available, the benefit of talking to other carers abut how to cope with difficult behaviour, how to reassure an anxious husband or wife, avoid unnecessary medication. A recognition that their husband wasn't himself, that they were right and that they could explain the diagnosis to people.

Continuity

After diagnosis what was the most valuable aspect of care? Continuity. There was significant anger at changes to carers, to services that had been changed. Trusting a carer was so important, establishing a routine crucial. Changing times of service offered, the carers involved and worst of all insisting on a move to a different care home had significant effects on patients and their families.

Understanding

Carers weren't embarrassed by their loved one's behaviour or condition. But they did want understanding and compassion. This included health professionals, carers and the public. There were positive stories about the police, about officers going above and beyond to make sure patients were safe. What would happen if someone forgot to pay and walked out of a shop? This was a cause of some anxiety for some of the carers and patients.

Most said it would have been easier if the diagnosis had been cancer. There would have been a clearer path to diagnosis, more certainty regarding progression, more understanding.

Back to planning

This was the story behind the plans. We have already significantly improved the community memory service and commissioned an excellent outreach team. But we can do more - improving diagnosis accuracy, access to local scans and specialists. But its what we do afterwards that matters most. Focus on continuity, avoiding unnecessary antipsychotics. And listen to carers.


Bassetlaw Dementia Summit is on 5th February, bringing together more than 100 carers, professionals and partners including surgeries, hospitals, voluntary services and emergency services.