daisy chain

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Viewing 15 posts - 1 through 15 (of 63 total)
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  • #121391

    daisychain
    Participant

    Hi Matt

    I’ve been going to the Marsden sutton for the past 3 years and seen by Martin Kaiser. Prior to that prof Gareth Morgan. I live in Hampshire and its a real pain if a journey to get to. but wouldn’t change hospitals. Yes it is extremely busy. But I’ve found them to be at the forefront of care and expertise.  Apparently they have a very effective MDT meeting where new cases and cases up for change of treatments are critically assessed by experts within the Marsden (which I understand happens in all hospitals). I’m led to believe that even if you’re not under one of the top consultants you’re case will always receive the attention it deserves.

    Good luck

    dawn

    #121388

    daisychain
    Participant

    Hi vicki

    Recent years fatigue has played a major part in my daily life.  It has taken time to accept and adapt to the changes.  Mind you I think getting older has a part to play too lol

    #121387

    daisychain
    Participant

    Hi alan

    a little belated to say thank you for your posting.  It’s great news that the Carfilzomib is working so well for you. Have you been taking any other drugs with it? What is your protocol? Did you get any side affects?

    ive been on it since end of last year combo Iv methlyprd, thalidomide, it’s holding my disease but flc are still high 2,800. Recently my kidneys were affected due to dehydration had to have Iv fluids for a week. . Been advised to keep focused on my fluid intake.

    good health

    dawn

    • This reply was modified 9 years, 2 months ago by  daisychain.
    #119553

    daisychain
    Participant

    Hi Karen, Tony and Jeffery

    many thanks for sharing your experiences with me.

    Karen, to clarify I am unable to access clinical trials unless I want to stop receiving private care services at the Marsden  as they don’t allow patients  to alternate between the 2.

    So for example I am currently able to access Carfilzomide through private ins and the support I will get consultant, prescriptions,  etc will be costed to my private ins.

    If however, there is a better drug suited to me on a clinical trial and my consultant thinks I should go on the trial. I would need to transfer over to being a NHS patient with no option to transfer back to private in the future!

    All a bit confusing eh.

    Best wishes

    Dawn

    #119523

    daisychain
    Participant

    Hi Rebecca

    Your post was really inspirational to read. Thank you. I am totally In tune with your comments.

    However, Whilst I’ve read all the self help books, mindfulness, counselling etc. to get me to the emotional state you mention. as soon as I get a “blip” with my results/need to change treatment. All what I’ve learnt over the years goes right out the window!

    Best wishes to all

    Dawn x

    #119522

    daisychain
    Participant

    Hi Simon

    I totally support the advice Ellen has given you. The myeloma UK helpline incl Ellen have been fantastic in supporting me since my diagnosis Many years ago.

    I feel the uncertainty of living with mm is the most difficult for me..Over the years I have gained strength by seeing a clinical psychologist, counselling (using a technique called cognitive behavioural therapy this has really helped me).

    I’ve practised something called mindfulness and have read many self help books.

    Good luck and I wish you all the very best.

    Dawn

    #119520

    daisychain
    Participant

    Hi Jeffery

    The way you’ve explained Leics Hosp, The Marsden Sutton runs exactly the same, including running behind time !!!

    What about access to clinical trials it that only available if you are a NHS patient?

    Best wishes

    Dawn

    #119517

    daisychain
    Participant

    Hi dusk

    Thanks for your response, I do know what you mean as until recently I was cared fOR under NHS. I did keep with the same consultant at my district hospital in Basingstoke, Dr Roy and Dr Sargant.

    However, 3 years ago I went for 2nd opinion at the Marsden and went private (policy through my work) as this guaranteed seeing prof Gareth Morgan.

    Disadvantage being private I don’t have access to clinical trials. Policy at Marsden is you have to stay NHS or private and can’t swap between both.

    Regards

    Dawn

    #119516

    daisychain
    Participant

    Hi Julie

    Please don’t misunderstand me my expectations of good quality of life have adapted over the years.. Such as adaptions to manage a weakened immune system and managing different treatment protocols..

    Good luck

    Dawn

    #119506

    daisychain
    Participant

    Great news long may it continue!! Where are you being treated

    Dawn xx

    • This reply was modified 9 years, 6 months ago by  daisychain.
    #119505

    daisychain
    Participant

    Thank you Julie

    I’ve been on a lot of different types of treatments. So it’s difficult to say how I got on with each one. The positive thing is that since diagnosis I have been able to live a good quality life. Over the years I have had to make many adaptions to my life. The biggest roller coaster for me is the emotional insecurity living with mm.

    It great that you are in a position to start SCT in January and I wish you all the very best.. Where are you being treated?

    Dawn x

    #96243

    daisychain
    Participant

    Hi All

    Its great having all this legislation Equality Act and best practice from ACAS, MacMillan etc; and yes we very often forget about the people who are self employed, whilst we are trying to remain employed with our existing employer.

    Should you find yourself in a position where you need to discuss reasonable adjustments or "leaving" the company and things get a bit difficult for you to manage. It may worth considering getting someone to accompany you at the meetings who is experienced in this field ie staff rep/TU, who can take the pressure off you and be able to look at things objectively

    good luck to you all

    PS found a really good book that's helped me look at my job/career differently "Women, Work and Autoimmune Disease" by Rosalind Joffe and Joan Friendlander

    "is a book for women (sorry guys!!) who live with chronic illness, encourgaing them to stay employed to preserve their independance and sense of self"

    #96316

    daisychain
    Participant

    Hi Susan

    my hairdresser uses the foil method to colour and/or highlight my hair so that the colour doesn't go direct onto my scalp. Obviously it touches my scalp when it's being washed out! but I feel better knowing its not staying on for very long.

    all the best

    dawnx

    #96240

    daisychain
    Participant

    Hi again

    Your storey similar to mine was told to focus on my health and family.. However, my kids are living their lives I feel a bit like Wendy Craig "life is like a butterfly" and at 52 I'd not planned in my mind or financially for early retirement! And if I spend too much time forcing on my health I get myself in a right emotional state surfing the net etc!!!!

    The question I ask is why do I go to work?

    Is it I love the job I'm doing? The people I work with? The money? The chance to put my "glad rags" on? Status in society i.e. I work as … I work for…. I work days per week as… As opposed to I'm retired not that retirement is a bad thing it's weather or not you are mentally prepared for it

    The government is always harping on about how it is good to go to work – here's an extract from ACAS supporting the benefits of going to work

    "ACAS Foreword
    For many employees work means a lot more than just their wage. Studies show that work is generally good for health and prolonged sickness absence can produce its own set of problems: isolation, de-skilling, loss of confidence, mental health issues and social exclusion.
    Keeping people at work and helping them get back to work as soon as possible can help maintain an employee’s health and wellbeing and improve organisational effectiveness. Managing sickness absence can be a challenge for many employers. Why is someone off? When will they come back? Is there anything I can do to help?"

    Good luck

    Dawn xxxx

    #96234

    daisychain
    Participant

    Hi tom

    Seems to me your employer is supportive and has "enhanced" their policy to support you which is great ! You may find your employer would be very nervous about making you redundant because of your rights under the equality act 2010. Again would suggest you contact ACAS for more information.

    I take it you've found out about pension ill health retirement? Have you ever thought of opening up a discussion about a "settlement agreement" in the old days was called a "compromise agreement" with your employer

    Extract from ACAS web site

    "Settlement Agreements came into effect on 29 July 2013.

    To support their introduction, Acas has produced a statutory Code of Practice which explains what settlement agreements are and provides guidance on the new law which concerns the confidentiality of settlement agreement negotiations.
    In addition to the code Acas has also produced a non-statutory guide which provides more detailed guidance on the use of Settlement Agreements.
    View/Download:

    Code of Practice on settlement agreements [1Mb].

    Settlement agreements Acas guide [695kb].

    Key points about settlement agreements

    Settlement agreements are legally binding contracts that waive an individual's rights to make a claim covered by the agreement to an employment tribunal or court.
    The agreement must be in writing.
    They usually include some form of payment to the employee and may often include a reference.
    They are voluntary.
    They can be offered at any stage of an employment relationship.
    Settlement agreements are legally binding contracts which can be used to end an employment relationship on agreed terms. They can also be used to resolve an ongoing workplace dispute, for example, a dispute over holiday pay. These agreements can be proposed by either an employer or an employee, although it will normally be the employer.

    Once a valid settlement agreement has been signed, the employee will be unable to make an employment tribunal claim about any type of claim which is listed on the agreement.

    Where the employer and employee are unable to reach an agreement, the settlement discussions cannot usually be referred to as evidence in any subsequent unfair dismissal claim. Where the settlement discussions are held to resolve an existing dispute between the parties they cannot be used as evidence in any type of claim.

    Reaching a settlement agreement

    For the settlement agreement to be legally binding the following conditions must be met.

    The agreement must be in writing.
    The agreement must relate to a particular complaint or proceedings.
    The employee must have received advice from a relevant independent adviser, such as a lawyer or a certified and authorised member of a trade union.
    The independent adviser must have a current contract of insurance or professional indemnity covering the risk of a claim by the employee in respect of loss arising from the advice.
    The agreement must identify the adviser.
    The agreement must state that the applicable statutory conditions regulating the settlement agreement have been met.
    Employees should be given a reasonable amount of time to consider the proposed conditions of the agreement; the Acas Code of Practice on settlement agreements specifies a minimum of 10 calendar days unless the parties agree otherwise.

    Settlement agreements are voluntary and parties do not have to agree to them or enter into discussion about them. There can be a process of negotiation during which both sides make proposals and counter proposals until an agreement is reached or both parties decide no agreement can be reached.

    If a settlement agreement is not reached and depending on the nature of the dispute or problem, resolution may be pursued through a performance management, disciplinary or grievance process, or mediation whichever is the most appropriate. It is important that employers follow a fair process and use the Acas Code of Practice on Discipline and Grievance procedures because, if the employee is dismissed, failure to do so may be grounds for a claim of unfair dismissal.

    Settlement agreement meeting

    Although there is no statutory right for the employee to be accompanied at any meeting to discuss the agreement, an employee may want to involve someone to help them, such as a work colleague or a trade union representative. Employers should, as a matter of good practice, allow an employee to be accompanied when meetings are held as this can often help progress settlement discussions.

    Ending the employment relationship

    When the settlement agreement includes an agreement to end the employment relationship, then employment can end with the required notice, or the timing can be agreed as part of the settlement agreement.

    Details of payment and the timing should be included in the agreement; any payments should be made as soon as practicable after the agreement has been reached.

    Call the Acas helpline

    If you would like further advice on settlement agreements and what they may mean for your organisations' employment relations practices please call the Acas helpline on 08457 47 47 47."

    However before going down this route would recommend getting in dependant advice from a financial advisor especially as it would have impact on your company benefits

    Good luck

    Dawn x

Viewing 15 posts - 1 through 15 (of 63 total)