Monday, 28 May 2012

Time to tackle the artificial divide between physical and mental health

The Department of Health Long-Term Conditions Strategy website has regular article contributions, and the one from Sean Duggan is particularly interesting. He discusses the interaction between mental and physical health in relation to patients with long-term conditions.

"What is less widely acknowledged, and certainly less well managed, is that some 4.6 million people have both [mental and physical conditions] at the same time."

He points out the fact that "depression and anxiety are significantly more common among people with a range of long term physical illnesses" and gives evidence for the negative impact that mental health conditions can have on physical health outcomes. This is a really important point to have made - there is an interplay between mental health and physical health, which we don't fully understand yet, but know exists enough to warrant attention!

As a solution to the problems of a physical/mental divide, Sean Duggan suggests "collaborative care arrangements between primary care and mental health services, including psychological therapies, can improve the quality of support people receive at little extra cost to the NHS." A fantastic well written argument with some excellent points!

Wednesday, 23 May 2012


Illness and its accessories (wheelchairs, walking sticks, orthotics and compression stockings to name a few) can have a very large and detrimental on self-esteem and personal image. The limitations of some conditions make it impossible to wear certain things. A nice outfit which you feel comfortable in can really boost confidence. I hated having to wear elasticated trousers during one relapse because I couldn't stand up and do up buttons at the same time! The pleasure of skirts is quickly lost when ankles are bandaged up with orthotics! 

Although my experience is limited, I can identify with Ann Olivers, who addressed the issue by setting up a company that makes clothes designed for people in wheelchairs and with a range of disabilities. 


Another example of how little things you would never have thought of before being in a wheelchair can have a really positive impact on someone's confidence and self-esteem. 

Tuesday, 22 May 2012

Mental Health Awareness Week

It has been really encouraging to see the coverage that mental health awareness week is generating. The Mental Health Foundation and Mind are running some great campaigns - particularly Doing Good Does You Good which promotes the value of volunteering. The saying is true - I find volunteering fun, rewarding and puts me in a more positive mood. It can also be a way of giving back something, when as a patient you have received so much support!

Mental health is a big problem and awareness is growing, but one area I hope to see mentioned is the mental health consequences for patients with long-term conditions. Often ignored by medical professionals pre-occupied with the physical condition, the depression and anxiety can build up and end up making the physical condition worse. I hope that doctors become better at taking into account mental health when they talk to any patient about their condition(s). Any health change we go through is accompanied by an emotion - some of those emotions need professional help and doctors are ideally placed to signpost to that.

Health Foundation Self-Management Resource Centre

I have recently come across this gold-mine of self-management resources on the Health Foundation website!

It is full of practical advise and great information . . . patient stories, project examples & tool kits, tips for doctors . . .

As well as being really useful for one of my current projects, it is enormously reassuring to see self-management being taken so seriously by such an influential organisation in the health-care sphere. The striking thing about the site is the focus on support - by definition, self-management is done by the patient (the clue is in the name!), but the Health Foundation have recognised that self-managers needs support to start, and to self-manage optimally. That is quite often the key to successful self-management, so great that support is given weight here. However, as a seasoned self-manager, its maintaining the positive self-management behaviour that takes serious effort! The clue is perhaps in the name, but when oneself-manages a long-term condition, it really is for a long time!

Finding the motivation to sustain all the little different things I do can, on days, daunt me so much it terrifies me. But being able to use sites such as this to remind myself of the positive benefits can help boost the motivation when I need it!

Just one symptom?

The BMA Local Medical Committees Conference has brought up a very controversial issue. Some GPs have been reporting that there are 'one patient, one problem' signs outside some surgeries.

The BMA have registered that this has a significant impact on GPs ability to provide holistic care.

How can patients with multiple long-term conditions really relay their situation without bringing up multiple symptoms? Even if they only have one physical symptom, what about their mental health?

I think these signs probably are aimed at the patients that store up complaints until they have enough that they feel can warrant an appointment - but it does send out completely the wrong message to patients!

Friday, 18 May 2012

The Change Curve

A well-known phenomenon, that was discussed in a recent training course I attended - The Change Curve - is very recognisable to any patient who has been on the roller-coaster that is being diagnosed and then living with a long-term condition. It is also quite reassuring to see all of your emotions laid out - it helps minimise that feeling of not coping, as everyone goes through this process following any change, let alone the change that comes with a long-term condition diagnosis!

Thanks to the Health Foundation for creating 'The Pattern of Change and Transition' handout!

Life Impact Wheel

Wouldn't it be interesting (and possibly scary!) to know what the differences are between the patients perception of their their situation and the doctor's perception of it?
Doctors may be acutely aware of the health aspect of my life, but I wonder how much they appreciate the impact that has on everything else - finances, relationships, career, hobbies and friends...

Now I know doctors are human, and may well have been ill them  selves, or had close family members or friends suffer illness. At medical school I knew that your health impacted the rest of your life, but I didn't comprehend the significant of the impact of what doctors consider quite minor conditions. Neither did I appreciate it in the context of long-term conditions.

Making each party aware of what concerns the other could really help improve communication and team work between patient and doctor. Using a Life Impact Wheel could be a clear way to illustrate that . . .
Get both the doctor and patient to fill it in, marking on a scale from 1 - 10 the  impact the illness is having on various aspects of their life (work, happiness, social life, relationships etc.), and any discrepancies should be easy to see. The scale of the whole problem is also easy to see with this model - something that patients can find hard to convey to doctors.

It only takes a sheet of paper (or maybe a fancy app one day!) . . . but seeing the disease in the wider context of someone's life could make a significant difference. I'm not saying it will generate a cure, but it might help the doctor understand the disease and non-clinical ways in which they could help (or signpost to). Related Posts Plugin for WordPress, Blogger...

Head injuries illustrate the point

An article appeared in The Times on Saturday 12th May about the 'silent epidemic' of head injury victims lacking support.

It was a shocking article - head injuries can leave people with some enormously challenging disabilities that are often invisible to many. It  really highlighted for me the issues for patients with long-term conditions.

"But while improvements in paramedic and acute care are rapid, the care provided to victims after they leave hospital is poor. . . . patients who receive the best treatment that the NHS can offer, at significant cost, immediately after suffering a trauma are then left to resume life, often with disastrous outcomes."

The critical stuff in A&E and the operating theatre is glamorous and emotive enough to secure funding and research hours. But the NHS has to look at the bigger picture - what happens when that patient is discharged? It is quite interesting and distressing that as soon as head injury becomes a long-term condition, the NHS is failing many of these patients whom is had served so well when they presented as an acute case.

The charity Headway is addressing this. It seems odd that the area of treatment for these patients that is the most costly, technologically and medically difficult is the one that has been addressed most successfully! The simple interventions of counsellors, social workers, community nurses - i.e. human hours - is hopefully no longer going to be neglected.

Baroness Hollins' Desert Island Discs

Kirsty Young's castaway this week was Baroness Hollins, the professor of psychiatry of learning disabilities.

It was very inspiring, and encouraging - she is becoming president of the BMA in a few months time, so hopes to raise the profile of mental illness (and learning difficulties), and has had serious illness in the family too so understands the reality for patients.

One of reasons she went into Psychiatry was because as a GP, 70% of her patients had emotional and psychological problems - a stint in psychiatry would help her understand them, but then she stayed in the discipline! 70% is a staggeringly high number, especially if ones considers the small number of weeks doctors spend during their training on a psychiatry rotation. There really is a psychological element to every long-term condition and illness.

She also talks about the diagnosis of her son with learning difficulties was a slow gradual realisation that dawned on them, rather than a quick and simple diagnosis - something that I think a common experience for most patients with long-term conditions.

Worth a listen (here) - very interesting story!

Thursday, 17 May 2012

Relying on the Doctor

Alf Collins has written about a very inspiring story on the long-term conditions blog on the DH website. He talks about a clinic that was full of patients waiting for the doctor to do something.

"He knew that the biomedical 'treatment' model only gets you so far when working with people who have long-term conditions." - SO TRUE!

One of the most important and possibly easy-to-replicate changes was the education of supporting clinicians about the service provided by the clinic. Passing this information onto patients is valuable - without destroying all hope of treatment, patients need to approach clinics with a sense of reality and therefore appropriate preparedness. Leading on from this they put in place "a system to make sure that patients were prepared to come to the clinic - they were encouraged to know about their condition, to come to the clinic prepared to ask questions and to think about what they might do to manage their health more effectively in between appointments."

This 'we will help you if you help yours self too' approach might be quite contrary to some peoples expectations of doctors but I think giving patients responsibility and control is important. If the patient is not ready to own their health, this approach would not work, but understanding this, they also published outcomes of the clinic "so that patients who might think of coming to the service in the future could make an informed choice about whether the service was right for them." 

This approach feels very sensible and effective - it is a simple but inspiring story! Having a group of patients who rely on appointments for no particular reason is dangerous - empowering them can make more effective use of everyone's time! I would like to attend this clinic!

Wednesday, 16 May 2012

Alexander Technique

Worried about tension building up in my neck because of the tensing I now subconsciously do to 'protect' my neck following diagnosis of structural abnormalities in that region, I have started having sessions on Alexander Technique.

I enjoyed my first session, it was relaxing, and I left feeling impressed. It was not draining having to recount my story (I normally find this very difficult!) - it just felt like a chat with a friend rather than the usual grilling and barrage of questions! Good question asking technique makes the consultation feel effortless!

One thing that really stood out was that on hearing my story the teacher quickly asked about my emotion well-being - something highly refreshing for a patient used to the physical focus of mainstream medical professionals!

The Brain and Spine Foundation

Yesterday I had a completely novel and wonderful experience - I spoke to a qualified healthcare professional within minutes about a concern, had my concern and emotions addressed and felt reassured!
 Concerned about possible side effects with the Alexander Technique, I did not feel that I could discuss it with my consultant because he was a) impossible to get hold of outside of appointments and b) this was too minor to hassle him. My GP is fantastic but often refers me to my consultant for the specifics about my conditions. I am still waiting for a specialist nurse!

So, I rang the Brain & Spine Foundation, spoke to a lovely friendly neurology nurse who reassured me about trying this new therapy, checked that my condition was being appropriately managed and was enormously reassuring.

UPDATE: I have had another fantastically reassuring and comforting call with a nurse from the Brain and Spine Foundation, and have been reminded what a fantastic service they provide. Even when there is no answer to my difficult questions, they can reassure me, and help just by listening. They also now have a great forum for people to discuss all things neurological.

Being able to call and speak to an expert is an amazing service, and provides invaluable reassurance! Thank you Brain & Spine Foundation!


Yesterday I attended an NHS Customer Care training session, as a Patient Ambassador with the Patient's Association. To open the session, we talked about experiences of customer care, good and bad. One example was brought up about the speed at which supermarket cashiers throw items down the belt at Tesco's and other large chains. This leaves the customer unable to pack as quickly as the items are arriving at the packing end - frustrating! One person in our group said that they had to do this to reach their targets - a relation of theirs worked in a supermarket and has to meet targets of time spent scanning items/dealing with each customer.

This relates to service in the NHS, an organisation all too familiar with targets. Targets can be introduced with the best will in the world and with the ultimate aim of improving patient/customer experience, but in trying to meet them patient experience can be detrimentally affected. Many targets are very rational, but the reality of efforts to achieve them can often seem ludicrous in specific cases.

Staff could explain some of their actions which may seem ridiculous to patients in terms of their targets. This may help confused patients to place difficult-to-comprehend actions into a wider picture of improving quality!

Friday, 11 May 2012

Waiting . . .

I have been invited to join a Task & Finish group locally looking at self-care which is a really exiting opportunity. In my reading in preparation for it I have come across the idea of challenging peoples behaviour whilst waiting . . . for an operation/appointment/drug or whatever.
This struck home this morning while I was talking to another patient who has put everything on hold until they have an operation. I recognised my own self a year ago in their attitude. I used to put off addressing issues until the next appointment. Having done the Expert Patient Programme I now see (although don't always do this!) that the waiting period could be filled with specific action plans that for example mean a quicker recovery from surgery or a more useful appointment. 'Waiting' for something that put people in quite a powerless situation and can induce plateau in peoples self-management and improvement.
Supporting patients through the 'waiting' time, and making that period count for something is hard! But important! Getting into the habit of postponing action-planning till the next appointment is dangerous - for most patients with LTC, there will always be a next appointment!

What does integrated care mean?

The Kings Fund have been asking today on Twitter what 'integrated care' means for patients, carers, doctors and managers.

See the other responses here.

For me, integrated care is about doctors taking responsibility for me as a whole patient who has to live in the 6 months between appointments, and is concerned with the wider picture of my emotional health and lifestyle, not just the disease of which they are an expert in! For example, as a patient with 5 conditions I long for one doctor who will take into account all of them and the change in my life because of them, and bear it all in mind when considering the next steps. It would mean having a solution when admitted to hospital, instead of being discharged by the general acute staff once the issue I was admitted with in under control, with the underlying causes still un-addressed.

Thursday, 10 May 2012

Multiple Morbidities

Leading on nicely from one of the issues highlighted in the DH patient blogs, the BBC today has an article about a study in The Lancet which looks at the number of patients who have two or more illnesses. They found that over a quarter had two or more long-term conditions and identified an issue that is clear to patients - a lack of co-ordination between the specialist healthcare teams. A very good suggestion is made by the author, Dr Chris Salisbury, from the School of Social and Community Medicine at the University of Bristol, is that "in hospitals, those with multimorbidity should be assigned to a generalist consultant who would be responsible for co-ordinating their care."

Graham Watt, Professor of General Practice at Glasgow University, reiterated that point,saying that "rather than more specialists, patients with multiple conditions need someone who can oversee all the problems of a patient."

The reality of that may be different - it is important that the doctor who is overseeing the patient knows what their responsibility is, and acts on it!

Wednesday, 9 May 2012

Patient input into DH LTC strategy

It is really encouraging to see the DH asking for input on its strategy for long-term conditions. Patients are the experts in the reality of long-term conditions, and have some valuable ideas for those designing services. 

The DH has included two patients so far on its LTC webpage. Di Hopkins discusses living with a neurological LTC and 2 other LTCs. As a patient with several LTCs (several neurological), I can understand her frustration with the specialized nature of the services. Her husband Jeff has also written a blog post (see here), and he asks for something which I think would be of enormous value to patients. Other patients experience is very helpful, both practically and emotionally - and sometimes in the cases where patients have a number of rare conditions, might be the only option where medical research is lacking. Jeff comments "More information on the experience of patients with similar long term conditions would allow for better personal management of changes that might occur. It would be helpful if information sought about long term conditions, their interaction, resources, organisational operations and patient experiences could be accessed through a personal, informed guide/mentor."

He also points out that the strategy should not only address the clinical condition but also the "cognitive, social and emotional fallout for patients, families, work colleagues and carers" - something which has enormous impact but I feel can often be overlooked (although the DH is consulting mental health charities on the strategy).

I think these are two very balanced and well written blogs. They are not rants, but describe the issues. Importantly, they have also provided possible solutions for the problems, which is really constructiveLooking through the comments on the Have Your Say page of the LTC site, I am pleased to see the constructive nature of some replies too! It is clearly a very emotive subject for carers, patients and family affected! Although often prone to a rant myself, reading these comments makes me realize how to effectively give feedback - show the problem, and suggest a solution! 

Lessons from the Year of Care

The Year of Care is a programme based in the north of the country and has been focused on created a reproducible and effective way to embed personalized care planning into routine care. Although like most big pilots it was mainly concerned with the big LTCs (diabetes, asthma, heart disease), the lessons from it are applicable to most long-term conditions. 

The Year of Care highlighted the importance of information as a key component of routine care. For example, diabetic patients were given information about their test results ahead of the care planning appointment. Sue Roberts (Chair of Year of Care Partnerships) said "putting information exchange at the heart of the routine clinical encounter significantly improved patient experience and engagement, and altered the power relationships with clinicians".

The other important finding was that "these benefits were only seen in the context of supportive systems and attitudes". This places additional emphasis on the "the importance of a new mindset for clinicians as the driver of these changes".  

It would be great to see some of these ideas used in pilots for more rare long-term conditions, where information may be not be so cut and dry like blood sugar in diabetes - surely in these cases, information is all the more important because of its relative rarity!

Long-term Conditions Strategy at the Department of Health

The Department of Health are currently working on a long-term conditions strategy, and their website is full of links to interesting articles highlighting the issues and their possible solutions at many different levels.

Don Redding (Director of Policy at National Voices) has written an excellent blog post. He makes two very important points.
Firstly, that "Long term conditions are not ‘managed’ by health, social care or other government services, but by the people who live with them. For us and our carers, this is a 24/7 reality." He later goes on to say that this represents challenges at the individual patient level and at a higher service level. This is a key idea, because any new system will have to meet the needs and provide beneficial outcomes for individual patients, but must be scale-able, so that many patients can benefit. There is often conflict between these two!

The second point is very reassuring to see. As a patient I have found keeping track of my different doctors quite difficult and often longed for someone to bring it all together and oversee my meandering journey through the NHS. Don linked to 'care webs', which clearly illustrate the "bewildering complexity of services [patients] need to access", and says that "what people most want is access to a known care co-ordinator who both knows about the patient and their condition and is able to plan and arrange their packages of care." Interestingly, he goes on to say that "this is not always the same as ‘integration’ – for the person at the centre, coordination matters more than whether the services are actually merged or joined together."

ENOPE: Lancet Review

The Lancet Journal recently published an article about the ENOPE conference, detailing some of the key discussion points. 

ENOPE organiser Ilona Kickbusch described patient empowerment as "a process to help people gain control, which includes people taking the initiative, solving problems, and making decisions, and can be applied to different settings in health and social care, and self management 

It summed up the issue with the traditional paternalistic model very well - it "creates dependency". The NHS and healthcare providers across the world can not cope if all long-term condition patients become dependent on their services. Independency creates a plethora of positive emotions and is more sustainable as a patient model. 

The conference highlighted the main topics as health literacy, chronic disease self-management, and the role of technology. These sum up patient empowerment very well!

As with any scheme, reaching the people who need it the most is always a challenge - something that was acknowledged in Copenhagen. "The reality is that doctors have limited consultation time and resources, and not all patients can, or want to be empowered." Robert Johnstone (of the International Association of Patients Organisation) says that “doctors should get down from their pedestals, but patients must get up from their knees.” Yet he adds: “empowerment is not about trying to wrest power from the doctors, it is essentially helping people lead more proactive and fulfilling lives.” I think that is a very important distinction to make, and possibly critical in getting doctors on-board!

"Although [patient empowerment] will never substitute professional acute care, by learning to self manage, people with chronic diseases are more likely to remain integrated into society and the workforce." Again another very important point, clearly stating the areas that could benefit from patient empowerment. 

The article ended on this; "starting a dialogue directly with medical professionals on patient empowerment seems the critical next step" which I agree with. I think there is ample evidence on-line of patients ready to become empowered, but that change needs to be facilitated by willing clinicians!

The value of face-to-face time

Despite recent posts about new technological solutions to some problems in health, I want to make clear that I believe they are additional aides for a doctor, and should not replace face-to-face time - they would just improve the effectiveness of that time.
An article in PULSE talks about a report by the Deloitte Centre for Health Solutions, which suggests that declining GP numbers and increasing patient demand for their services are making face-to-face GP consultations unsustainable. Rather an extreme conclusion maybe?!? I believe that technology can supplement some of the work, but it must not replace it. From experience I have rung out-of-hours or had telephone consultations with my GP who has said they really can not advise with out having seen me.
With a long-term condition, your emotional and psychological state is enormously important and that requires face-to-face meetings for doctors to see the impact that the condition is having on your life. To talk specifically about 'deconditioning', my GP commented that if I looked like I had not got dressed and was no longer taking interest in how I looked he would be concerned that I was becoming deconditioned. So many subtle observations can be made while meeting someone in person that loosing a face-to-face consultation would, I think, lead to a decline in the care of mental health conditions, as well as the overall 'care' experience for patients.

Messages about Medication

Of the key issues that patients have to self-manage when they have a long-term health condition is their medications. Remembering to take them and managing the interactions and side-effects can be a real challenge.
A study discussed in  the GP publication PULSE, has found that weekly text messages can be a useful tool for clinicians in helping increase patients adherence to medication regimes. It is relatively easy to implement as a system, but might not address the issue for elderly patients who are not using mobile phones? But a significant proportion of patients are tech-savy and use mobiles . . . it will be interesting to see the uptake by local NHS clinics? There are a number of other examples of text messages being used that I have discussed on this blog, and for younger patients who can often feel very isolated by their condition, I think it could have a positive effect. I wonder how many managers, nurses and doctors are on-board?

Wednesday, 2 May 2012

Tim Parks: Teaching us to sit still

I have just finished Tim Parks 'Teaching Us To Sit Still: A Sceptic's Search for Health and Healing'. It was an interesting read, although I found it quite heavy on the meditation descriptions and literary references! He did make some good points, and some sentences really caught my attention.

" . . . illness is not a separate thing circumscribed in symptoms, diagnosis and cure, but part of a whole that has no separate parts." (page 5)

"Every illness is a narrative. What matters is the version you tell yourself." (page 35)

"Illness . . . like love or hate, draws everything to itself, turns everything into itself. Whatever I thought about came back to that: my condition." (page 44)

"Only a culture that tries to keep body and mind separate would need to use a word like psychosomatic." (an ayurvedic doctor, page 77)

"Most people feel ashamed if told their problem is psychosomatic. They feel accused, guilty. It is acceptable to have a sick body, that's not your fault, but not a sick mind. The mind is you, the body is only yours." (page 79)

"Without evidence of organic damage, pains were perhaps unimportant. At least to doctors." (page 115)

"I had begun to envy people who were indisputably ill. I wanted to be seriously seriously ill myself, so that people could see my condition and it would be all out in the open and someone would finally have to do something." (page 142) 

The Language Barrier and its Implications

Whilst waiting for an MRI scan in a top central London hospital , I observed two very thought-provoking incidents. As a patient, I have often found communication difficult with my doctors - despite speaking English as a first language and having a good understanding of medical terminology - but I saw a new level of communication challenges.

The first incident was when a patient could not speak English, so had brought her daughter along. The radiographer was asking the daughter, as a translator, the standard questions before the scan about implants and operations. When asking about kidney function, the daughter did not understand the word 'kidney'. I was called for my scan, so do not know what happened. For a scan where the possibility of metal implants could pose a serious health risk, such important preliminary screening questions can not afford to be lost in translation. For such a central London hospital, one would expect a large proportion of patients to not have English as their first language - the cost and trouble of printing the standard questions in other languages must surely be considerably less than the cost and trouble of 'ferro-magnetic accidents' when patients enter the scanner with implants. One other simple solution could be to have a poster of the human body annotated with the heart, brain, eyes, spine and kidneys - the organs mentioned in the questionnaire - which staff can use when trying to explain the questions to patients.

The second incident involved the same issues. This time a man who could not speak English became distressed by the noise of the scanner (they are very loud!) - so much so that the scan was not able to be completed. In previous scans, I have had a parent in the scanning room with me - surely this should be offered to patients who rely on someone else to communicate with the English-speaking technicians? Not being able to complete the scan will have implications for the patients' subsequent diagnosis and care, and also presents a financial concern for the time of the staff and scanner.

With headlines in 2011 suggesting the NHS spent millions and millions on translation, it is difficult to understand why incidents like this still happen in hospitals in some of the most multi-cultural areas of the country!


The Stroke Association has published a report about the level of after-care patients who have had strokes receive. I can identify with the frustrations of the Association and patients affected.
The new thrombolytic treatments and emergency response are indeed saving lives, but a lot more unglamourous work needs to be done in the follow-up. There are no block-buster drugs and a limited selection of technology to rely on that can replicate good care. The after-care requires a significant infrastructure and human hours - which is always going to difficult to source and fund.
The time after a discharge can be the scariest part of any episode of ill health - with no medical staff on hand. It is important to save lives in A&E, but equally important to provide those survivors with a quality of life that is worth the investment in life-saving treatments - which requires human time. Fighting the stroke, or any health condition, in A&E should be the very beginning of a care plan. The issues highlighted by the Stroke Association are sadly not unique, and could apply to the sentiments of many patients with a range of conditions.