Are you a MS carer? What are your needs? #MSBlog #MSResearch
“My post on the weekend on the impact that MS has on the family received some interesting, and very touching, comments; thank you. The following editorial in last week’s BMJ highlights issues in relation to carers in the management of long-term conditions such as MS. It is clear we don’t take the needs of carers’ into account nearly as often as we should. I am aware that many carers read this blog and the number of posts we write focusing on carer issues is minuscule. Do you want more information on carer-related issues? If yes, what?”
Al-Janabi et al. Editorials: The need to “carer proof” healthcare decisions. BMJ 2016;352:i165.
Excerpts:
….. fiscal austerity are set to increase the reliance on family carers, who already provide much of the support for people with long term health conditions…..
….. Carer proofing challenges researchers to provide better evidence of the effectiveness and efficiency of interventions from the perspective of all those affected. It also challenges care professionals and policy makers to focus their thinking on how the well-being of the patient-carer dyad could be optimised. There is both a moral and a practical imperative to consider carers in healthcare decisions given the vital role they have in supporting the health system……
“My post on the weekend on the impact that MS has on the family received some interesting, and very touching, comments; thank you. The following editorial in last week’s BMJ highlights issues in relation to carers in the management of long-term conditions such as MS. It is clear we don’t take the needs of carers’ into account nearly as often as we should. I am aware that many carers read this blog and the number of posts we write focusing on carer issues is minuscule. Do you want more information on carer-related issues? If yes, what?”
“It is important to realise that as governments reign in on socialism (the UK in particular), state support will need to be replaced by family support. In most parts of the world this happens already; if there is no state-sponsored safety net it falls on the family to look after their loved with MS. This mean care for pwMS will increasingly be done by family members and/or friends. We will need to prepare ourselves for this as they will need specialised training and support. We need to set-up and run education and training sessions for the families of people with MS, similar to our Digesting Science courses for children of pwMS?”
“I must confess until reading the BMJ Editorial below I had never heard of the term ‘carer proofing’ before. This is something that up until now has passed me by. When I do my next rendition of my ‘holistic approach to the management of MS’ I will have to add a separate line for carers and cover all the issues relevant to their needs. Any suggestions on the topics/stops you want covered on the carer line would be much appreciated?”
Al-Janabi et al. Editorials: The need to “carer proof” healthcare decisions. BMJ 2016;352:i165.
Excerpts:
….. fiscal austerity are set to increase the reliance on family carers, who already provide much of the support for people with long term health conditions…..
…… Although most carers are willing, providing care can be hugely stressful, affecting mental and physical health and resulting in social isolation and financial hardship……
…… When under strain, carers are less likely to be effective, increasing the risk that the care recipient is admitted to hospital or a care home. Health systems could reduce strain on family carers by routinely considering carers’ needs alongside patients’ needs in everyday healthcare decisions—a concept we term “carer proofing.”…….
….. At the policy level, how care is organised for people with long term conditions can profoundly affect the lives of carers. The notion of integrated health and care services, for example, holds the hope of reducing the stress that carers experience from lack of joined up care. On the other hand, integrated services might be concentrated on fewer but larger sites, resulting in greater travelling time and less personal service for already stressed family carers…….
……. At the clinical level, guidelines often recommend involving carers in care decisions, where possible. Nonetheless, carers may get squeezed out because of lack of patient consent or busy clinical schedules. If the clinical decision affects the carer, this ought to be taken into account in order to ensure good adherence to the treatment plan. Carer proofing is likely to be particularly valuable at times of change, such as around diagnosis or when someone takes an active caring role……
…… Enhanced carer proofing could complement existing interventions to support carers, such as respite care, carer support groups, and individual education and training. One problem with existing forms of carer support is that the interventions often come too late, with carer stress treated as an inevitable side effect of the patient’s condition. To support carers better, carer outcomes should be considered in healthcare decisions for long term conditions from the outset……
….. At the policy level, how care is organised for people with long term conditions can profoundly affect the lives of carers. The notion of integrated health and care services, for example, holds the hope of reducing the stress that carers experience from lack of joined up care. On the other hand, integrated services might be concentrated on fewer but larger sites, resulting in greater travelling time and less personal service for already stressed family carers…….
……. At the clinical level, guidelines often recommend involving carers in care decisions, where possible. Nonetheless, carers may get squeezed out because of lack of patient consent or busy clinical schedules. If the clinical decision affects the carer, this ought to be taken into account in order to ensure good adherence to the treatment plan. Carer proofing is likely to be particularly valuable at times of change, such as around diagnosis or when someone takes an active caring role……
…… Enhanced carer proofing could complement existing interventions to support carers, such as respite care, carer support groups, and individual education and training. One problem with existing forms of carer support is that the interventions often come too late, with carer stress treated as an inevitable side effect of the patient’s condition. To support carers better, carer outcomes should be considered in healthcare decisions for long term conditions from the outset……
….. Carer proofing challenges researchers to provide better evidence of the effectiveness and efficiency of interventions from the perspective of all those affected. It also challenges care professionals and policy makers to focus their thinking on how the well-being of the patient-carer dyad could be optimised. There is both a moral and a practical imperative to consider carers in healthcare decisions given the vital role they have in supporting the health system……
Re: "We need to set-up and run education and training sessions for the families of people with MS, similar to our Digesting Science courses for children of pwMS?"Yes that's a good idea and also eventually have an online version too for those that can't make it London. This could include short videos of training/education sessions for carers to watch when they get available time, use Youtube may be. Good to refer back. I noticed there's an Expert Patient Programme course for carers called 'Looking After Me' and is a self management course for adults who care for someone with a long-term condition. To help carers look after their own health needs. Might have some ideas.
There is an online version of digesting science and as Alison will furthershow this week, it is not just London centric and this week she will be propping up a deck chair in Bourmouth. However, Alsion and Colleagues have been busy making the digesting science activities mobile and postable so anyone in the country should be able to access this. Based on what I have seen, some of the activities have been good to explain things to the parents, notably the dads of our affected mums.
I've been thinking of few ideas for the carer training/education sessions.1) Communication between family, friends and professionals. Including use of smartphone/tablet/laptop apps to co-ordinate care between friends and family. Also lists medications, allergies and healthcare appointments.2) Future planning. 3) Tiredness, relaxation techniques, depression, exercise and healthy eating. Lifting, handling and welfare benefits – signpost to other organisations perhaps.
I would say that an online version is really needed. There's no way I can get my husband, my full time carer, to attend any sessions here (in Canada, by the MS Society) that support care givers. He would see it as a sign of weakness.
When I look back at the time I was newly diagnosed, I find myself as a very selfish person. I was very afraid of the disease and the uncertainties it brings and didn't realize that MS was as difficult for my family as it was for me. It scares me that those same emotions will come back if and when I transition to the progressive phase. I am afraid of being selfish the second time because I now have a child. What scares me is how his mother's MS would affect him. I would prefer if my MS would have a more positive impact on him and he grows up to be a nicer person because of it. He is very young now, but I would like to know how to approach this subject as we raise him.
May be an idea of the protocol of care an MSer will go through and how to get this information would be useful. For example those on a DMT, how often blood tests should be, the same for urine tests, how frequently are MRI's as routine monitoring. How often are routine neurologist appointments. And MS nurse appointments or are these on an as and when needed basis. MSers not on a DMT – how frequently should neuro and MS Nurse appointments be, also MRI's. I am an MSer not a carer and don't have clarity on some of these. My carer (family member)only gets information from me.