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 constructive! Looking 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!