Carers need WRAP too
At Edinburgh Carers Council we offered carers WRAP (Wellness Recovery Action Plan) training, which was delivered, by WRAP trainers and co facilitated by myself. As group cohesion developed over the 6 – 8 weeks training, we felt it would be good for the Group to continue meeting every month. I facilitate this WRAP Group offering carers a safe & contained space in which to continue to develop their own WRAP, allowing them the opportunity to reflect and find ways to maintain their own mental health and well being.
Edinburgh Carers Council started the first two WRAP Groups over three years ago and they continue to meet every month. The reason for Edinburgh Carers Council having the WRAP for carers evaluated is that we could see that carers when given the WRAP training with the ongoing WRAP Group, meeting monthly, over time, their mental health & wellbeing increased, as well as their confidence and self esteem. It also helped carers develop a more interdependent relationship with the person they cared for.
The evaluation bears this out and it is our hope that other organisations will be able to use this evaluation as a framework to offer and encourage carers to reflect on how their own needs can be met and their own quality of life improved.
Edinburgh Carers Council
The Canon Mill
1-3 Canon Street
T: 0131 270 6087/6089
Scottish Recovery Network
Edinburgh Carers Council
"Reporting on the evaluating of the See Me Grant"
In December 08 we received a small grant from the SeeMe Campaign to address the needs of carers caring for someone who attracted the diagnosis of BPD/PD. In December 09 we had to do a report and presentation on what we'd done, I've attached the report for your reference, you're welcome to put it on your website as I think other people may be interested in what we've been doing for carers. The groups we started are on going. Please feel free to contact me should you require any further information, I'm more than happy to explain more.
Edinburgh Carers Council
The Canon Mill
1-3 Canon Street
T: 0131 270 6087/6089
Personality Disorder Who cares.....for the Carers?
Since the publication of the Department of Health's "Personality Disorder – No Longer a Diagnosis of Exclusion" in 2003, some very welcome progress has been made in the provision for services for people who meet the criteria for the diagnosis.
The introduction of specialist Personality Disorder services engendered a new sense of hope, not only in people with the diagnosis, but also in those who cared for them. The diagnosis that had once triggered rejection by and exclusion from, mental health services, now signified eligibility for access to supportive specialist services that could offer the tantalising option of a "road to recovery" to all who entered them. This promise of treatment utopia was swiftly tempered by a massive dose of reality. Although a conservative estimate suggesting that personality disorder affected between 3% and 7% of the UK population was widely accepted, the provision of specialist mental health services to address that fact has been incredibly under-resourced. This has resulted in a weak "sprinkling" of specialist personality disorder services throughout the UK, and effectively, a "post code lottery" when it comes to determining who will be able to access these essential services.
In theory the path to appropriate treatment for personality disorder is quite straightforward. A GP who has concerns about the mental health of a patient can and should refer that person to the local CMHT (Community Mental Health Team) for an assessment of their needs. The CMHT should access the needs of those referred to them and in cases where a personality disorder is diagnosable or suspected, the CMHT should refer them on to a specialist personality disorder treatment service. Carers of those diagnosed are entitled to and should be offered, a separate assessment of their needs.
In reality however, this is not the experience of the majority of carers. In a rather perverse twist of circumstances, many carers find that the old barriers of rejection and exclusion that for so many years had blighted the lives of the people they cared for are now being deployed against them.
The path to specialist treatment for personality disorder has many obstructions and hazards. Service users and their carers usually get to the CMHT stage without too much difficulty, but that is often where the present system flounders. Service users often have to be contained within the CMHT services because there is no specialist personality disorder service in their area. Not all CMHT's have MH professionals who are either experienced in the field of personality disorder or have an in depth knowledge of the needs of those diagnosed. Consequently the ability of individual CMHTs to appropriately address the needs of PD service users or their carers varies wildly throughout the UK. Often, little or no consideration is given to the plight of carers. The fact that personality disorder does not only affect the life of the person diagnosed, or that becoming a PD carer is not a positive career move but more so a role ordained by sheer necessity, seems to be beyond the comprehension of some mental health professionals.
Carers are routinely ignored by some MH services and are left to struggle with the harsh realities of loving and supporting the diagnosed person without any support whatsoever for themselves. Carers often have to bear the brunt of aggressive behaviour by the diagnosed person. They often have to try and address serious instances of self harm by the diagnosed person. They are frequently the focal point on which the disordered person can unleash a vitriolic verbal representation of the acute emotional distress that they are suffering. The stark truth is that many carers often exist in a state of total isolation and utter despair. It is no surprise therefore, that carers of personality disordered people have the lowest levels of well being, of any group in our society today. It has been suggested by well meaning individuals that a personality disorder "carer's manual" could be formulated and distributed to carers. This might suffice in a few cases but such a scheme could also allow some MH services to abdicate their responsibilities towards carers and simply fob them off with a booklet. There are already several good books available to carers such as "When Hope is Not Enough" by Bon Dobbs but these do little to address the acute and very emotionally crippling sense of isolation experienced by most carers.
By far, the best national source of information and support for carers currently comes from other carers. Carers4PD (www.carers4pd.co.uk) now host several online support forums, including one for Scottish carers. Carers are able to reach out and communicate with other carers and they often express their great sense of relief at being able to share their problems with others who fully understand their plight. Carers4PD are also involved in helping to plan and deliver training and support programs for carers. Recently they were consulted by Edinburgh Carers Council and helped to initiate what is now an ongoing training and support course being run in Edinburgh for PD carers. Details are available from the Edinburgh Carers Council. (0131 270 6087 /270 6089.
It is clear that there are simply not enough specialist personality disorder services throughout the UK- including in Scotland. Those that are operational are often heroically punching way above their weight as they try to address the needs of many, with very limited resources. They often have long waiting lists for referral and/or assessments. Some use part of their precious budgets to provide outreach services to assist local CMHTs and other agencies with the diagnosis and assessment of patients. Others promote a managed clinical network approach that involves close collaboration with other services including social services, housing, police and A&E services.
What evidence there is available suggests that when a carer is meaningfully involved in service user treatment programs, the recovery period for the service user is shortened and the recovery is more sustainable. Carers are a valuable resource and the recently published NICE guidelines for both BPD (Borderline Personality Disorder) and ASPD (Antisocial Personality Disorder) effectively acknowledge and validate the importance of the carer factor. There is no ambiguity about the NICE guidelines and throughout their published recommendations there are several references that advocate the involvement of carers in all aspects of treatment programs.
Borderline Personality disorder is undeniably excruciatingly debilitating for the diagnosed person. It distorts that person's perception of themselves and others. It was described by a very articulate service user at a recent conference as being a "cancer of the emotions". Patterns of unstable behaviour associated with this disorder invariably impact on the primary carer, or family and friends of the person with the disorder. They need help to first understand the disorder and then to better support the service user. Carers come in all shapes and sizes. They include mothers, fathers, partners, grandparents, children and friends.
Although a vast amount of new knowledge about personality disorders has been injected into MH services over the past few years, amazingly there are still some MH professionals who cling to beliefs that should by now have been lost in antiquity. They still routinely condemn carers as being part of the problem rather than part of the solution. They do a great disservice both to the diagnosed and also to the people who care for them. Thankfully, a few of the more progressive PD services are starting to address the needs of carers, and they are reaping the benefits of doing so. Many of them have long waiting lists and they have found that by engaging with carers and providing them with information and training on personality disorders, they are able to reach out and positively affect the lives of service users who have not yet been able to fully access their specialist services. This commendable proactive approach demonstrates the power of essential outreach services, at their very best and as up to 15 carers can be engaged at one time, it is a very cost effective option. Financial restraints often determine the effectiveness of many PD services. However, for those services who have yet to make any sort of provision for carers – and there are many, this question still remains unanswered; Who cares for your carers?? Dennis Lines. Carers4PD. www.carers4pd.co.uk
Letter from Denis Lines - Feb 2009
As you may be aware, my focus is on providing help support and information for people who are caring for loved ones who suffer from personality disorders. To that end, and having previously provided direct telephone support to individual carers nominated by them, I have now strengthened my collaborative links with the Edinburgh Carers Council. We are currently engaged in planning a training program exclusively for PD carers in Scotland. This will take place in April this year. To further enhance this initiative, an online support forum specifically for Scottish PD carers has also been provided. A link to this support group can be found on our new UK PD- carers website www.carers4pd.co.uk. This website is now being further developed as a resource solely for PD carers. It will include helpful information on existing PD services throughout the UK and also provide links to them.
I am also collaborating with the ongoing PD Strategy for N. Ireland, via the Belfast Self-Harm service and they are anxious to forge collaborative links with Scottish PD services and Scottish carers. A recent PD strategy conference that I attended in N. Ireland, showed a great interest in engaging with PD carers right from the start. There is also a link to a N. Ireland carers support forum on the new website.
As new PD services are being developed throughout the UK, and to bring our database up to date before uploading it to the website, I would appreciate details of all current Scottish PD services. It would also be helpful if you could offer the new online Scottish PD carer support forum as an additional resource for any carers approaching your services for help and support.